9/11 Survivors May Be At Greater Risk of Developing Autoimmune Diseases

Jennifer Waddleton, 51, is suffering from an autoimmune disease after serving as a 9/11 first responder. Image courtesy of NBC news.

Jennifer Waddleton, 31, was working as a paramedic in emergency medical services when she was called to ground zero in New York City on September 11, 2001, after the devastating terrorist attacks on the twin towers. Waddleton is among an estimated 400,000 people who were exposed to toxic debris after the collapse of the towers.

At the time, Waddleton didn’t realize the impact that responding to the event had had on her physical and mental health. Now, however, things are different. She can barely stand for more than 30 minutes at a time or tolerate sunlight. She has brain lesions, her hair is falling out, and her teeth are deteriorating.

“My body is failing me at 51,” said Waddleton, who was diagnosed with cancer, chronic acid reflux, sinus issues, and post-traumatic stress disorder (PTSD). But Waddleton began to experience other symptoms that couldn’t be explained by these diagnoses, including crippling fatigue, chronic migraines, and difficulty swallowing. She knew something wasn’t right.

“In the back of my head, I always knew,” she said. “But everyone was like: ‘No, there’s nothing wrong with you. It’s all in your head. You need sleep, you work crazy hours. Stop complaining’.”

Despite dealing with medical gaslighting for years, Waddleton eventually had kidney failure, and doctors couldn’t deny her poor health any longer. She was diagnosed with systemic lupus erythematosus (SLE) in 2012, 11 years after responding to 9/11. Lupus occurs when the body’s own immune system attacks and damages its organs and tissues.

Before being diagnosed, Waddleton was concerned that her troubling symptoms were somehow related to her experience as a 9/11 responder, and if there were others out there experiencing the same thing. According to several research studies, Waddleton’s concerns are valid; autoimmune diseases do appear to be on the rise among 9/11 victims and first responders alike.

Autoimmune diseases may have been triggered among 9/11 victims as a result of exposure to toxic dust at the scene. Crystalline silica, a construction mineral and major component of the debris, is a noted risk factor for autoimmune disorders. Other chemicals found on-site, like organic hydrocarbon solvents and asbestos, have also been associated with immune dysfunction. A 2015 study found that for every month a first responder worked on the World Trade Center site, the risk of developing an autoimmune disease rose by 13%. A 2019 study based on over 43,000 World Trade Center Health Registry participants found that first responders with intense exposure to the toxic dust were almost twice as likely to develop systemic autoimmune diseases. The most frequently diagnosed autoimmune conditions were rheumatoid arthritis, Sjogren’s syndrome, lupus, myositis, mixed connective tissue disease, and scleroderma.

The same 2019 study also purported that PTSD may also be responsible for triggering autoimmune disorders among 9/11 victims and first responders. This confirms other research on the connection between chronic stress, adverse childhood experiences (ACEs), and autoimmune disease.

Many victims of 9/11 can have their health insurance covered or receive a financial payout from the September 11th Victim Compensation Fund and the World Trade Center Health Program. However, autoimmune diseases are not acknowledged by the compensation fund nor the health program. This means that those who suffer from autoimmune diseases are ineligible for free health care, and cannot receive compensation for their suffering. Most of the covered conditions on the list include acute injuries, lung conditions, cancer, and mental health issues.

Multiple petitions among 9/11 victims have requested to have autoimmune diseases added to the list of covered conditions, to no avail; the federal government has cited lack of sufficient evidence proving the link between autoimmunity and exposures from 9/11. Another issue is that autoimmune diseases may have a genetic component, making it even more difficult to prove that the development of these conditions was caused by exposures during 9/11, and not the patients’ own genetic makeup.

So for now, first responders like Waddleton will have to wait until the research catches up. Waddleton manages a Facebook group for 9/11 emergency responders who have suffered from autoimmune diseases after the event, and has seen first-hand the effects that it’s had on these patients.

“It’s incredibly frustrating,” she said. “They left everyone else hanging. This wasn’t supposed to be my life.”

To read more about this story, visit the NBC news website.

The Importance of Sleep with a Chronic Illness: Top 3 Reasons

Getting adequate sleep is important to maintain vital health- an especially so for chronic illness patients. Image courtesy of the Sleep Foundation.

If you have a chronic illness, you’ll know all too well the feeling of going about your day when you’ve had poor sleep. That feeling of mental grogginess, accompanied by the physical aches…it’s not fun. Sleep performs several essential functions beyond just improving your mood, memory, and mental clarity. Sleep actually has important physiological impacts on your body as well. Read on to learn the top three reasons why sleep is especially important for chronic illness patients.

1. Decrease Inflammation

According to the Division of Sleep Medicine at Harvard Medical School, there is a link between lack of sleep and the risk of developing certain diseases and health problems. For example, sleep deprivation studies have shown that when healthy research study participants were deprived of adequate sleep levels, they experienced increased blood pressure and inflammation levels, in addition to impaired blood glucose control. These symptoms actually mimic the impact of increased stress on the body. Other studies have found that prolonged sleep deficiency can lead to chronic, body-wide low-grade inflammation and is associated with various diseases that have an inflammatory component, such as diabetes.

As many of you know, increased inflammation and an abnormal inflammatory response are what underlie many chronic illnesses, including autoimmune disease. As a result, it’s important to get enough sleep to ensure that your inflammation levels stay in-check.

2. Prevent Weight Gain & Hormone Imbalances

In addition to increasing your inflammation, studies have shown that a lack of sleep can also lead to weight gain. For instance, people who habitually sleep less than six hours per night are much more likely to have a higher than average body mass index (BMI), and people who sleep eight hours have the lowest BMI. For this reason, sleep deprivation is now considered a possible risk factor for obesity.

Poor sleep increases cortisol levels, a stress hormone that can increase visceral (mid-section) body fat storage. It is associated with increases in insulin as well; insulin is a hormone that regulates glucose processing and also promotes fat storage. A lack of sleep can also be the culprit for lower levels of leptin, a hormone that alerts the brain that it has had enough to eat, and higher levels of ghrelin, a biochemical that stimulates one’s appetite. This means that those with poor sleep may have intense food cravings, and feel hungry despite consuming enough calories.

3. Strengthen Immune Memory

According to the Sleep Foundation, sleep helps to strengthen immune memory, which is the immune system’s ability to remember how to recognize and react to dangerous antigens. With autoimmune disease, patients’ immune systems incorrectly attack their own healthy tissues and cells. As a result, autoimmune patients have immune systems with poor immune memory. Getting adequate sleep levels can help to strengthen your immune system’s ability to differentiate between your own tissues and foreign invaders.

Although the exact reasons why sleep helps your body to improve its immune memory are unknown, there are several hypotheses. For example, it’s believed that because breathing and muscle activity slow down while you’re asleep, your body now has freed up the energy for the immune system to perform these critical immune-memory tasks.

Another way that sleep helps your immune system is through the production of melatonin, a sleep-promoting hormone. Melatonin is known to have anti-inflammatory effects by scavenging toxic free radicals, which cause tissue destruction during an inflammatory reaction. Melatonin also reduces the over-expression of a variety of pro-inflammatory cytokines, which can cause a cytokine storm in one’s body. There is also some evidence that melatonin inhibits the production of adhesion molecules, which are responsible for causing inflammatory white blood cells to stick to endothelial cells in one’s connective tissue.

How Much is Enough?

By now, you may be convinced that you need more sleep…but how much shut eye is really enough? According to the Sleep Foundation’s guidelines, adults aged 18-64 need between 7 to 9 hours of sleep every night. Adults over the age of 65 are recommended to get a similar amount of sleep – between 7 to 8 hours – each night. Infants, children and teens need even more hours of sleep to sustain their growth and development.

Sleep Problems and Chronic Illness

Having a chronic illness like an autoimmune disease can directly impact your ability to get quality sleep. For instance, many autoimmune patients suffer from chronic pain, which makes it challenging to fall asleep or to stay asleep. In fact, two-thirds of patients with chronic pain conditions report experiencing sleep disorders like insomnia.

I myself have Sjogren’s Syndrome, which, in addition to chronic joint pain, causes severe dry eyes and dry mouth. In my earliest days of living with Sjogren’s, I had difficulty staying asleep, since I would constantly wake up every few hours to chug bucketloads of water to relieve my chronically dry mouth, go to the bathroom (as a result of all the water I was drinking!) and put in eyedrops to relieve my severely dry eyes. Fortunately, I was able to find relief for my dryness symptoms through prescription and over-the-counter products, which made it possible for me to get a good night’s rest, without having to constantly wake up.

Chronic illnesses can also result in mood disorders like depression and anxiety, which can in turn make falling asleep difficult. If you’re staying up late at night due to incessant worrying about your health problems, it’s important to get treatment for your mental health conditions from a provider who understands the realities of living with a chronic illness.

Thanks for stopping by the Autoimmune Warrior blog! Do you have difficulty sleeping with your chronic illness? Let us know in the comments below!

Christina Applegate Reveals Multiple Sclerosis Diagnosis

Actress Christina Applegate has revealed that she has MS, a neurological autoimmune disease. Photo courtesy of Mike Coppola via CNN.

49-year-old actress Christina Applegate revealed on Twitter this week that she has been diagnosed with multiple sclerosis (MS), an autoimmune disease affecting the central nervous system. Applegate says she was diagnosed “a few months ago” after experiencing symptoms of the disease.

Commenting on her diagnosis, she said: “It’s been a strange journey. But I have been so supported by people that I know who also have this condition. It’s been a tough road…but as we all know, the road keeps going.”

According to John Hopkins Medicine, multiple sclerosis occurs when the immune system attacks nerve fibers and the myelin sheath – a fatty substance which insulates healthy nerve fibers – in the brain and spinal cord. This attack causes inflammation, which destroys nerve cell processes and myelin, altering electrical messages in the brain.

There are different types of MS, the most common of which is relapsing-remitting multiple sclerosis, which affects 90% of those diagnosed. Symptoms of a multiple sclerosis relapse include: fatigue, numbness, tingling, blurred vision, unsteady gait, and weakness.

Worldwide, more than 2.3 million people live with MS, including almost 1 million adults in the United States alone, according to the National MS Society. The neurological autoimmune disease can be disabling, although the MS Society states that the majority of people with the condition do not become severely disabled. Two-thirds of people who have MS remain able to walk, though they may need a mobility aid, such as a cane, and some will use a scooter or wheelchair because of fatigue, weakness, balance problems, or to assist with conserving energy. 

Since coming out as newly diagnosed with MS, Applegate has received an outpouring of support from fans and other celebrities with the disease. Fellow actress Selma Blair, who co-starred with Applegate in a romantic comedy in 2002 and also has multiple sclerosis, tweeted: “Loving you always. Always here. As are our kids. Beating us up with love.” Talk show host Montel Williams, who also has MS, also tweeted his support: “We have MS – it will never have us unless we let it. Tara and I are sending hope and light your way.”

MS isn’t the first health battle Applegate has faced. In 2008, the star revealed that she had had a double mastectomy after testing posting for the BRCA gene, pre-disposing her to breast cancer. Facing her new MS diagnosis, Applegate has requested “privacy…as I go through this.”

Top 5 Must-Have Products for Dry Skin | Sjogren’s Syndrome Series

As many of my subscribers know, I have an autoimmune disease called Sjogren’s Syndrome. One of the main symptoms that Sjogren’s patients can experience when living with this chronic inflammatory condition is dry skin.

Dry skin can take on many forms in Sjogren’s patients. From cracked lips to itchy skin rashes, there’s no shortage of dry skin symptoms when it comes to Sjogren’s. For me personally, my skin became so dry that my dermatologist diagnosed me with xerosis cutis, otherwise known as abnormally dry skin. So, how do I handle living with the chronic skin dryness caused by Sjogren’s?

1. Moisturize Daily with Skin Cream

My dermatologist recommended that since my skin was so dry, that I moisturize daily with a good skin cream. She also noted that there is a difference between skin creams and lotions. According to North Star Dermatology, skin creams and lotions are both made of a mixture of water and oil. However, skin creams are thicker and heavier than lotions, since they have a higher oil content (usually a 50-50 mix of water and oil). Lotions, however, have a higher water content, making them lighter than creams. If you have extremely dry skin, you’ll want to opt for a cream rather than a lotion, since creams provide a heavier barrier for keeping your dry skin hydrated.

The brands that my dermatologist recommended were the CeraVe and Aveeno for eczema skin creams (see links below). I find that using a high-quality skin cream right after a shower can also help to lock in moisture.

CeraVe Moisturizing Cream

Aveeno Eczema Therapy Cream

2. Use A Petroleum Jelly-Based Ointment

If you’re having really extreme dryness, you may want to opt for an ointment that will stay on your skin for longer than a traditional skin cream. Most ointments are made out of petroleum jelly, a thick substance that prevents them from being immediately absorbed into your skin.

In addition to Sjogren’s, I also have the inflammatory skin condition eczema (atopic dermatitis). One of the most helpful over-the-counter treatments for my eczema was a hydrocortisone ointment from Walgreens. I know a lot of people are against using steroid-based creams like hydrocortisone, but the over-the-counter variety only has about 1% cortisone. It would help to sooth the itchiness and redness associated with eczema, and I’ve also found it useful for dryness associated with my Sjogren’s.

I now use a prescription ointment from my dermatologist which is a bit stronger than the over-the-counter variety, but I’ve linked below the over-the-counter ointment that I used to use.

Walgreens Hydrocortisone Ointment, USP 1%

3. Slap on Some Sunscreen

According to Garnier, sun exposure can further dehydrate your dry skin, since the sun’s rays will decrease moisture and essential oils from your skin’s surface. For this reason, you’ll want to use a moisturizer that also contains some SPF.

Plus, it’s important that whatever sunscreen you use, that it’s non-comedogenic if you put it on your face, meaning that it won’t clog your pores. This is essential if you tend to get acne breakouts from skincare products. The funny thing is, despite having pretty dry skin, the oily skin in the t-zone of my face never fails to break out in pimples…even at the ripe age of 28!

Living in sunny Southern California, daily sunscreen applications are practically a must. I’ve tried so many different sunscreens over the years, especially for my face, and I think my favorite so far would have to be the COOLA organic classic face sunscreen. Not only is it non-greasy, it also smells great (like a fresh cucumber scent) and provides great sun protection with SPF 50.

COOLA Organic Classic Face Sunscreen

4. Don’t Forget Your Lips

It’s no secret that if you have dry skin due to Sjogren’s or another condition, your lips have probably been victim to your lack of hydration. Dry, chapped lips aren’t just uncomfortable, they can also be painful if your lips start to crack.

I’ve personally had the misfortunate of having both dry, cracked lips, and eczema around my mouth- a downright awful combination. Below, I’ve linked to my favorite favorite brands of chapstick – Burt’s Bees and Evolution of Smooth (EOS) – which I’ve used to relieve dry skin on my lips. You can also find chapstick with SPF, if you’re looking for extra sun protection.

Burt’s Bees Ultra Conditioning Lip Balm

EOS Organic Shea Lip Balm – Strawberry Sorbet

5. Humidify Your Environment

If you live in a dry environment, like a hot desert, or even a place that has extremely dry, cold winters, you’ll know what kind of damage it can wreck on your dry skin.

One year when I was 15, I spent the entire fall and winter in Canada, then spent the summer months in New Zealand (where it was technically the winter, since it was in the southern hemisphere). The 10-month long dry and cold fall/winter I had that year led me to break out in eczema rashes all over my body and my skin actually began to peel off in some places, to the point where I was shedding like I had dandruff all over my body!

If you’ve experienced anything similar, I would recommend investing in a solid humidifier that you can use to add moisture to the air in your dry environment. A humidifier is easy to use; all you need to do is refill it with water and plug it into a wall outlet, and a light mist will fill your room, making your dry skin more comfortable. They come in various sizes, so you can humidify a large room, or even a small office (just look for a ‘desk humidifier’). Below is the one that I use to humidify my home office, which is where I spend my time the majority of the week.

Crane Drop Ultrasonic Humidifier

Those are the top 5 must-have products that I would recommend as a Sjogren’s Syndrome and eczema patient with dry skin. Do you have a condition that causes dry skin? If so, what have you found has worked best for you? Let us know in the comments below!

Berkeley Alumni Create Startup Focused on Autoimmune Disease Therapies

Geo Guillen, Marco Lobba, and Matthew Francis, the co-founders of autoimmune disease biotechnology company Catena Biosciences. Image courtesy of Berkeley News.

Marco Lobba was pursuing his PhD in Chemistry at UC Berkeley when he and his lab partners made a discovery. He had been studying the modification of proteins when he happened upon a technique called “oxidative coupling,” which modifies proteins so that they can be fused together. He and his partners also found that the enzyme tyrosinase could be used to make oxidative coupling much faster and more efficient. Tyrosinase is a naturally-occurring enzyme, found in fruits and vegetables, and is responsible for turning apples and avocadoes brown as they ripen.

The accelerated oxidative coupling method could be used to fuse proteins together, faster and more selectively, than any other method currently in use. This opens the door to treating autoimmune diseases, which attack the body by convincing a person’s antibodies to attack their own healthy cells. Using this discovery, scientists can attach ‘safe’ signals to healthy cells, helping the body’s immune system identify its own cells and refrain from attacking them.

“Think of it almost like Pavlov’s dogs,” explains Lobba. “Or tricking children into eating their vegetables by covering them in cheese,” he elaborated. “If you present the immune system with something it likes — at the same time as something it is attacking — it starts to associate that target as a good thing.”

Lobba presented his discovery during a course on entrepreneurship at UC Berkeley’s Haas School of Business. During the presentation, fellow classmate Geo Guillen saw how passionate he was about his research, and the value of his discovery in the treatment of autoimmune disease. It was this purpose that drove the pair to work together alongside Berkeley Chemistry professor, Matthew Francis, to co-found a startup called Catena Biosciences, focused on making autoimmune disease therapies.

Their startup launched remotely during the COVID-19 pandemic, at a time when biotechnology and pharmaceutical companies have come into focus for the role their organizations play in helping to keep our communities healthy and thriving. The startup has been valued at $10 million for its innovative technology and ground-breaking research.

Guillen commented on his company’s founding, saying: “We identified that the autoimmune market is one that is particularly ripe for disruption because a lot of the approaches to treating autoimmune disease focus on the symptoms, instead of the root cause. It’s a pretty large, untapped market.”

Catena Biosciences is aiming to conduct pre-clinical trials by the end of August 2021, which will test the impact of their therapeutics on autoimmune disease reactions in patients. Next month, the company will be looking to raise more funds for their startup to help them commercialize the treatment. The founders’ hope is that they can have a positive impact on those living with autoimmune diseases, like multiple sclerosis, lupus, and Type 1 diabetes.

The company has been awarded the 2021 Berkeley Big Ideas Award for their entrepreneurial endeavors. To learn more about Catena Biosciences, read about the company on the Berkeley News blog.

Father Battles Kelch-11 Encephalitis, a Rare Autoimmune Disorder

Eric Walters works with his physical therapist to regain strength and mobility, after being diagnosed with a rare autoimmune disease (Image courtesy of USA Today).

Eric Walters was a fit, 45-year-old husband and father, living his best life in Stevens Point, Wisconsin. An avid mountain biker and ice fisherman who embraced Wisconsin’s chilly weather and loved the outdoors, Walters began experiencing some concerning symptoms in January 2020.

He worked as an electrician, and had many busy days on the job. One day when he woke up to go to work, he found himself extremely dizzy. After two weeks of dizziness, he decided to go to urgent care, thinking that he had an ear infection.

Unfortunately, Walters never made it to the clinic. Instead he passed out on the job, and was transported to the ER. After receiving a steroid injection and told he was suffering from vertigo, he was discharged without further explanation. Doctors at the time didn’t know it, but Walters was suffering from a much more dangerous condition than vertigo.

It turns out that Walters had developed testicular cancer, but even he didn’t know it. His immune system had gone after the cancer and eradicated it, leaving behind a non-cancerous mass of cells. But, even after the cancer was gone, Walters’ immune system went on the hunt for more KLH11, also called Kelch proteins, which are the cells associated with testicular cancer. Because Kelch proteins are also located in the brain stem, his immune system went after his brain as well.

When Walters began experiencing more dizziness, his doctors performed an MRI, revealing a lesion on his brain stem. At the time, his physicians thought he was suffering from multiple sclerosis (MS), a reasonable assumption given that this autoimmune condition also causes scarring lesions on the brain.

Walters was put on a treatment for MS, but continued to experience scary symptoms like double vision, dizziness, and a locking jaw. His facial muscles began to degrade, and just breathing took considerable effort. He received another MRI, which revealed that the single lesion on his brain stem had grown even larger. However, this was inconsistent with typical MS symptoms, which would result in multiple lesions.

At that point, Walters’ medical care team realized that they were dealing with something other than MS. He was then transferred to the Mayo Clinic’s Rochester, New York campus, where a friend of his had received excellent treatment. There he underwent a full battery of new tests, including an ultrasound and CT scan, which revealed the non-cancerous mass indicating that he had had testicular cancer. Combined with his symptoms, Walters was diagnosed with testicular cancer-associated paraneoplastic encephalitis, also known as Kelch-11 encephalitis for short.

Relatively little is known about Kelch-11 disease, which was only discovered by researchers in 2019. It is, however, known to be an autoimmune disease that causes severe neurological symptoms in men diagnosed with testicular cancer, affecting their limb movements, vision, and speech.

With his new diagnosis, Walters’ doctor prescribed him stronger steroids and chemotherapy to tamper down his rogue immune system. He also was inserted with a diaphragmatic pacer, which helps send signals to his lungs to keep breathing, along with a ventilator. Though living with Kelch-11 hasn’t been easy, Walters’ son Sam and wife Mary are what keep him going.

“We’ll become the poster child of Kelch if it means that other people don’t have to go through this,” says his wife Mary Walters. She wants to raise awareness for Kelch-11 disease, so others can get an accurate diagnosis and the treatment they deserve. According to Walters’ physician, Dr. Divyanshu Dubey, there are only 60 known patients who have been identified with this disease in the past few years.

As for Walters, he and his wife have faith that he will recover. “I’m just starting the healing process now,” he said. “Now I really get to fight.”

If you would like to contribute to helping Eric Walters and his family fight this devastating autoimmune disease, his brother has set up a GoFundMe fundraiser with the objective of raising $25,000.

The Connection Between Blood Type and Autoimmune Disease

Image courtesy of Medical News Today.

Medical researchers have long asked the question: Is there a connection between one’s blood type and autoimmune disease?

Clinical studies have had varied results, mostly due to the small sample sizes of each study. Though this area needs more research, this blog post will cover some of the research that has been published so far.

Study: Rheumatic Diseases and ABO Blood Types

A 2017 study in Turkey sought to find a link between particular blood types and the incidence of rheumatic disease. Rheumatic disease includes over 200 conditions that cause pain in your joints, connective tissue, tendons, and cartilage; many of these conditions are autoimmune diseases such as rheumatoid arthritis, Sjogren’s Syndrome, and systemic lupus erythematosus.

The researchers assessed 823 patients, with the following distribution of blood types: 42.5% patients had type A blood, 33.2% had type O blood, 15.4% had type B, and 8.9% had type AB. Each patient in the study had at least one of the following nine rheumatic diseases:

  • Behçet’s disease
  • Familial Mediterranean fever (FMF)
  • Rheumatoid arthritis (RA)
  • Spondyloarthropathy
  • Systemic lupus erythematosus (SLE)
  • Systemic sclerosis (SSc)
  • Sjogren’s syndrome (SjS)
  • Undifferentiated connective tissue disease
  • Vasculitis

Their study found that there was a significant difference in the distribution of blood types among those with rheumatic diseases. The most common autoimmune diseases among those with type A blood were: rheumatoid arthritis, spondyloarthropathy, vasculitis, Behçet’s disease, and undifferentiated connective tissue disease.

The most common autoimmune diseases among those with type O blood were: systemic lupus erythematosus, systemic sclerosis, and Sjogren’s syndrome. The researchers also noted that SLE, SSc and SjS are the connective tissue disorders frequently observed with antinuclear antibodies (ANA). The rheumatic disease familial Mediterranean fever was also found to be most common in those with type O blood.

Those with blood type AB were observed to be the least likely to suffer from rheumatic disease. However, it should be noted that type AB blood is also the most rare blood type in general, and represented the smallest amount of patients studied.

In addition, it was found that there was a significant difference in the distribution of Rh factor in rheumatic diseases. Of those with rheumatic diseases, 92.2% patients were Rh positive and only 7.8% patients were Rh negative. However, it should once again be noted that a positive Rhesus Factor (Rh+) is also more common among the general population than a negative Rhesus Factor (Rh-).

Is there a link between autoimmune disease and blood type?

So, if you have blood types A or O, does this mean you are more likely to get an autoimmune disease? The researchers who conducted this study concluded: “…we believe that the higher incidence of different rheumatic diseases in different blood types is associated with different genetic predispositions.”

In other words, since blood type is inherited (i.e. genetic), the results of the study point to a likely connection between certain genes and the increased predisposition for developing an autoimmune or rheumatic disease.

Do you know your blood type?

I, for one, do not know my own blood type. This is somewhat ironic, since I’ve undergone many blood tests as part of my Sjogren’s syndrome diagnosis, as well as for monitoring my liver enzyme levels while taking certain medications to control my autoimmune symptoms.

I actually did ask my primary care doctor what my blood type was the last time he ordered a test, and he advised that finding out your blood type is not a common part of the blood testing routine, and thus, he didn’t know what mine was.

If you have an autoimmune disease (or multiple diseases), and you know your blood type, comment below and let us know, are your condition and blood type consistent with the results of this study?

3 BioTech Companies You Can Invest In to Fund Autoimmune Disease Research

At Autoimmune Warrior, we believe that scientific research and development holds the key to unlocking new, innovative treatments and ultimately, a cure for autoimmune disease. In today’s blog post, we’ll explore three different biotechnology companies that are pioneering research about autoimmune diseases.

Why should companies research autoimmune diseases?

According to the American Autoimmune Diseases & Related Disorders Association (AARDA), there are over 100 different types of autoimmune diseases affecting 50 million people in the US alone. This demonstrates that autoimmune diseases are one of the most prevalent conditions nationwide. Furthermore, the AARDA reports that autoimmunity is one of the top 10 leading causes for death among American women. These figures show the high impact that medical research could have on autoimmune patients.

There is, of course, a financial incentive for biotech companies as well. A Research & Markets report indicated that as of 2017, the global autoimmune disease therapeutics market was estimated to be worth over US$109 billion. This figure was projected to grow to US$153 billion by 2025. Part of this growth has been attributed to the rise in autoimmune diseases among the general population and specific groups; although it’s been argued that medical professionals are becoming more aware of autoimmune conditions, and therefore, are simply getting better at diagnosing patients.

How can I help fund research & development?

If you or someone you love suffers from an autoimmune condition, you’ll know how important it is to find effective treatment options. As a result, you may consider investing your hard-earned dollars in companies that are pioneering autoimmune disease research. Below are three companies that I have personally researched that are contributing to this cause.

1. Landos Biopharma

Landos Biopharma is a Virginia-based company started by former Virginia Tech inflammation & immunology professor Josep Bassaganya-Riera, PhD. Landos is considered to be clinical-stage biopharmaceutical company focused on the discovery and development of oral therapeutics for patients with autoimmune diseases. In particular, the company is developing therapeutics for those with autoimmune diseases of the gastrointestinal tract, such as ulcerative colitis (UC) and Crohn’s disease.

Landos, which was founded in 2017, is a publicly-listed company on the NASDAQ stock exchange under the ticker symbol LABP. As of writing, the stock sits at just above US$12 per share.

2. UCB

UCB is a Brussels, Belgium-based multinational company, with a long history of research and development in the area of immunology. Some of the company’s autoimmune disease research areas include: rheumatoid arthritis, psoriasis, Crohn’s disease, lupus, and myasthenia gravis (MG). The company actively works with clinics worldwide to recruit for clinical studies with autoimmune patients; some of the studies they are actively recruiting for at the time of writing (June 2021) include patients with hidradenitis suppurativa, lupus, psoriasis and myasthenia gravis.

UCB is a 90-year-old company, and is publicly listed on the EBR stock exchange under the ticker symbol UCB. As of writing, the stock sits at just above 85 euros per share.

3. Abbvie

Abbvie is a Chicago-based multinational company that was spun off from Abbott Laboratories. Abbvie has been striving to advance the standard of care in rheumatology for more than 20 years. The company says that they are focused on developing therapeutics for patients with chronic diseases, which is said to account for 75 percent of all healthcare costs. Some of the company’s autoimmune research areas include: rheumatoid arthritis, systemic lupus erythematosus, psoriasis and multiple sclerosis. The company has already developed a number of well-known anti-inflammatory treatments, including HUMIRA (adalimumab).

Abbvie was spun-off in 2013, and is a publicly-listed company on the NYSE under the ticker symbol ABBV. As of writing, the stock sits at just above US$114 per share.

Would you consider investing in these biotech companies? Why or why not? Let us know in the comments below!

Disclaimer: This blog post is not intended to provide financial advice, but to raise awareness about companies conducting research & development towards advancing autoimmune disease therapeutics. Always consult with your physician before beginning a new treatment plan.

Laser Hair Removal for Hidradenitis Suppurativa (HS)

Can laser hair removal be an effective treatment for patients with Hidradenitis Suppurativa (HS)? Photo via Good Housekeeping.

For those of you who are new to the Autoimmune Warrior blog, I have two autoimmune conditions – Sjogren’s Syndrome and Hidradenitis Suppurativa (HS). Over the years, my HS has taken a backseat while I’ve dealt with my Sjogren’s symptoms.

In the past year, however, I’ve been more active about working with my dermatologist to manage this chronic autoimmune skin condition. By actively managing my HS symptoms, my hope is that I won’t move past Hurley Stage I of the disease, or even go into remission.

As I noted in my last blog post about my new Hidradenitis Suppurativa treatment plan, I’ve been working with a new dermatologist who has prescribed me a topical cream called resorcinol, in addition to the clindamycin and Hibiclens that I routinely use. Besides topical treatments, however, I’ve also started getting laser hair removal in my groin and underarms, which are the main areas where Hidradenitis Suppurativa affects me.

What does the science say?

For those who are unaware, laser hair removal has been cited as a way to reduce HS symptoms like boils and abscesses in the groin, underarms, and elsewhere in the body’s axillary regions. The logic is that, by using a laser to destroy your hair follicles, the follicle cannot get clogged; this is important, since, as my dermatologist explained, follicular occlusion is one of the main parts of the disease.

In fact, studies have shown that patients with Hidradenitis have seen improvement in their HS symptoms after receiving laser hair removal treatments. A 2011 study found that when 18 patients were treated in a single area affected by Hidradenitis twice a week with intense pulsed light over four weeks, they experienced ‘significant improvement’ in the mean examination score of their lesions. The patients also reported being ‘highly satisfied’ with their treatment.

Laser hair removal in HS patients

There are different types of lasers that can be used for laser hair removal. Some of the more effective ones have been found to be the long-pulsed lasers such as the IPL and Nd:YAG laser. The Nd:YAG laser in particular has found to be more effective on darker skin tones; this is because the laser needs to distinguish between your hair and skin color in order to work. Some clinical trials using the CO2 laser have also shown promise in the treatment of HS, but larger study samples are needed.

In addition to these studies, anecdotal evidence from other HS patients is what motivated me to move forward with getting laser hair removal to treat my hidradenitis. Reading the experiences of other bloggers who are living with the condition and have found positive results after laser hair removal gave me hope that I could experience the same benefits.

Drawbacks of laser hair removal for Hidradenitis Suppurativa

There are, however, some drawbacks to consider when getting laser hair removal to treat your HS. If you are at Hurley Stage III of the disease, for example, laser hair removal may not be the best option for you, since your skin is highly sensitive, and the laser may exacerbate inflammation and cause undue pain to the area(s) affected. Also, the laser may not be able to penetrate scar tissue that has formed as a result of your HS. For patients at an advanced stage of the disease, wide-excision surgery or deroofing may be better options instead, in combination with antibiotics or even immunosuppressants like Humira. In summation, laser hair removal is a more practical option for those with Hurley Stage I or II of the disease.

Also, though laser hair removal technology continues to evolve, if you have a darker skin tone and dark hair, or a lighter skin tone and light-colored hair, you may not be a good candidate for laser hair removal, since the laser may not be able to distinguish between your hair and skin.

Another drawback is the expense. Laser hair removal can cost thousands of dollars, depending on the type of laser used, the number of treatments necessary to see results, and the size of the area. Getting your laser treatment done at a medical clinic by a doctor or nurse, or at a beauty salon by a certified technician, may impact the price you pay. Furthermore, many health insurance plans do not cover the cost of treatment, since, despite the research out there, laser hair removal is still not a universally recognized treatment for hidradenitis suppurativa, and is viewed as a cosmetic procedure.

Finally, laser hair removal can take a long time. At the clinic I am going to, laser hair treatments are usually delivered every 4-8 weeks, depending on the area being treated. I am getting treated every 6 weeks, and while I think it is worth it to see results, patients looking for a more immediate change may be disappointed with such slow progress.

Should I get laser hair removal to treat my HS?

In conclusion, whether or not you should move forward with getting laser hair removal to treat your hidradenitis suppurativa symptoms is really a decision that should be made between you and your dermatologist. While HS is not an easy condition to live with, as biotechnology and pharmaceutical treatments evolve, and as patients and medical professionals become more aware of alternative treatment methods, there is hope for those living with HS.

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Top 5 Must-Have Products for Dry Mouth | Sjogren’s Syndrome Series

Living with dry mouth can cause an array of complications. Image courtesy of Orthodontic Excellence.

As many of my subscribers know, I have an autoimmune disease called Sjogren’s Syndrome. One of the main symptoms of Sjogren’s is dry mouth, also known as xerostomia.

While those with adequate saliva levels may not think that this is a big deal, us dry mouth sufferers know that even a small amount of mouth dryness can wreck havoc on your health. According to the Mayo Clinic, mouth dryness can cause an array of health issues, including mouth sores (ulcers), oral thrush (a yeast infection in your mouth), increased dental decay, tooth loss, gum disease, bad breath, issues with chewing, swallowing and speech, loss of taste, and poor nutrition and digestion.

In fact, one of the reasons I first got diagnosed with Sjogren’s Syndrome was because of my mouth dryness. I had gone to the dentist, and I was told that I had eight cavities (yes, eight!) when I had never had a single cavity in the entire 20 years of my life. Not only that, but I had a thick coating of white gunk of my tongue (yuck!), and my dentist told me that I had oral thrush. I had to take prescription antibacterial mouthwash to get rid of the yeast infection in my mouth. Finally, I was having issues with talking and swallowing food, especially if it was dry food, like crackers or chips. I was drinking loads of water each night, but nothing seemed to alleviate my thirst.

After I was diagnosed with Sjogren’s, I understood that mouth dryness was a large part of living with this chronic autoimmune disease. I was prescribed pilocarpine (the generic for Salagen) to help stimulate saliva production. However, it took an array of dry mouth solutions to help alleviate my mouth dryness. Here are my top 5 products that I would recommend for other dry mouth suffers, below.

1. Alcohol-Free Mouthwash

My first recommendation would be to switch to using an alcohol-free mouthwash. If you suffer from dry mouth, you probably know just how drying alcohol can be. Also, if you have a dry mouth, you are likely extra sensitive to how harsh an alcohol-based mouthwash is.

My go-to mouthwash is Biotene’s Dry Mouth Oral Rinse. It helps to keep bad breath from dry mouth at bay, and helps my mouth feel more moisturized after I’ve brushed my teeth and rinsed with it. It sounds strange, but I’ve found that I sleep better at night when my mouth doesn’t feel so dry. Plus, it keeps me from having to get up in the middle of the night to drink gallons of water!

Biotene Oral Rinse Mouthwash for Dry Mouth, Breath Freshener and Dry Mouth Treatment, Fresh Mint – 33.8 fl oz

2. XyliMelts

XyliMelts are kind of like cough drops, since they’re hard discs that you can suck on to stimulate saliva production, alleviate dry mouth, and freshen your breath. Unlike cough drops, however, they’re sugar-free (they contain xylitol), so they won’t cause dental decay, which is important for dry mouth sufferers.

Since there isn’t any chewing involved (unlike gum), they easily melt in my mouth, providing me with long-lasting dryness relief. Before I started working from home, I found that these were great to take into the office and keep in my desk drawer, so I wasn’t having to chug water all the time!

Xylimelts – Mint 40 Ct

3. Moisturizing Mouth Gel

The next must-have dry mouth product on my list would be a moisturizing mouth gel. A moisturizing mouth gel is basically a saliva replacement, that you can squirt into your dry mouth to make it feel more comfortable.

Though it doesn’t have the exact same texture as real saliva, and lacks the enzymes found in it (which aid digestion), I have found that using a saliva replacement helps me sleep through the night without having to wake up to constantly drink more water. It also makes wearing my night guard/retainer at night more comfortable. Plus, it can help during the daytime if I’m having a particularly bad day, in which my mouth dryness is affecting my speech and making my voice hoarse.

Again, my go-to product comes from the brand Biotene: the Biotene Dry Mouth Oral Balance Gel. I find it is the most saliva-like among the different brands I’ve tried (the first brand I tried had the texture of toothpaste!)

3 Pack Biotene Oral Balance Dry Mouth Moisturizing Gel 1.5 oz soothe oral tissues long

4. Electric Toothbrush

If you suffer from dry mouth, a regular toothbrush just won’t make the cut. In addition to frequently visiting your dentist and dental hygienist for regular check-ups and cleanings, it’s important to take steps in your own oral hygiene routine to prevent dental caries (teeth cavities) from developing.

I’ve used several different tooth brushes over the years, and my top two would be from Oral B and Philips. These high-powered electric toothbrushes give me a deep clean, and prevent plaque from building up on my teeth and my gums from developing gingivitis. So, if you’re using a manual toothbrush still, it’s time to upgrade to some better technology.

Philips Sonicare, HX687721 ProtectiveClean 6100 Rechargeable Electric Toothbrush, White, 1 Count

Oral-B Smart 1500 Electric Power Rechargeable Battery Toothbrush, Blue

5. Chapstick for Dry Lips

If you have severe dry mouth, you’ll know that sometimes your lips can get extremely dry too, even to the point where they crack at the corners and bleed! I also have a skin condition called eczema (oh, joy!) which further contributes to dryness and skin peeling around my mouth/lip area. That’s why I regularly use chapstick to keep my lips feeling moisturized and healthy.

My favorite natural chapstick brand has got to be Burt’s Bees. It’s made out of real beeswax, rather than synthetic chemicals (like the ones found in most lipsticks), which can dry out your lips even more. Plus, they come in lots of great flavors, like coconut and pear, vanilla bean and strawberry, so your lips will never be bored!

Burt’s Bees 100% Natural Origin Moisturizing Lip Balm, Multipack with Beeswax & Fruit Extracts, 4 Tubes

These five dry mouth products have made a big difference in improving my quality of life with Sjogren’s Syndrome. Though everyone has a different regimen that works best for them, I truly hope that this blog post helps you find dry mouth solutions that work for you. And let us know in the comments below: what dry mouth products do you use to help alleviate your dryness symptoms?

Remember, always talk to your doctor before beginning a new medication, regimen, or treatment plan. Please read Autoimmune Warrior’s product recommendations disclaimer on our About Us page regarding our participation in Amazon’s Associates Program.

Carrie Ann Inaba Takes Leave of Absence Due to Autoimmune Diseases

Carrie Ann Inaba has said that she is taking a leave of absence from her TV hosting role to focus on her health.

Carrie Ann Inaba, TV host on CBS’ The Talk and judge on ABC’s hit show Dancing with the Stars opened up about her struggle living with autoimmune diseases and chronic illnesses on her blog, Carrie Ann Conversations.

The Emmy award-nominated TV personality said that she has been diagnosed with several different autoimmune diseases and chronic conditions over the years, including Sjogren’s Syndrome, Systemic Lupus Erythematosus (SLE) and Rheumatoid Arthritis (RA), and she also has the markers for Antiphospholipid Syndrome (APS), which causes blood clots. The 53-year-old dancer and choreographer says she also struggles with fibromyalgia and spinal stenosis.

As a result of her various autoimmune conditions, Inaba has taken a leave of absence from her role on The Talk so that she can focus on her health, reports MedPage Today.

Talking about her health journey, Inaba said: “Even if we are fortunate enough to get a diagnosis, we can quickly end up with more questions than answers. Often when it comes to autoimmune conditions there is no perfect solution or clear path forward.”

Inaba continued, explaining: “Coping with autoimmune conditions can sometimes feel quite lonely. When I first got diagnosed, some encouraged me to keep my struggles to myself, but I’ve found that it’s always been better to be honest about my needs and realities than to stay silent. I believe strongly in sharing my journey, my solutions, and the things that have helped me.”

In this spirit, Inaba has shared on her blog the products that have helped her cope with her autoimmune disease symptoms – including eye dryness, mouth dryness, joint pain, fatigue, brain fog and more – so that others can benefit from these products and see if they work for them.

This isn’t the first time that Carrie Ann Inaba has opened up about her health struggles. The starlet previously posted on Instagram about how she felt ashamed of her autoimmune diseases, and wanting “…to be what people see. And people see a healthy person, from the outside.” However, confronting her health problems made Inaba reflect on who she is as a person, besides just her identity as a “sexy dancer chick.”

From all of us at Autoimmune Warrior, we want to thank Carrie Ann for opening up about her health journey as an #AutoimmuneWarrior, and raising awareness about the 80+ autoimmune diseases affecting over 23 million Americans. Because of celebrities like her, more people among the general population are learning about autoimmune conditions, and why extensive research is needed to find better treatments, and eventually, a cure.

7 Anti-Inflammatory Foods that You Can Grow in Your Home Garden

In this article, we explore seven anti-inflammatory foods that you can grow in your home garden.

According to the US National Library of Medicine, inflammation is your body’s normal physiological defense against pathogen infection. In normal circumstances, the inflammatory process ends quickly; but, with many chronic conditions, the immune system’s response continues well after an infection is present, leading to significant tissue and organ damage. This is the case with many autoimmune diseases, such as rheumatoid arthritis (RA), systemic lupus erythematosus (SLE), type 1 diabetes, and more.

Many autoimmune disease patients are forced to turn to pharmaceutical drugs to calm their overactive immune systems. Unfortunately, many of these immunosuppressant drugs are not without significant side effects. Plus, by decreasing your body’s ability to fight infections, patients may find that they’re vulnerable to bacteria and viruses, something that’s especially of concern now during the COVID-19 pandemic.

But, what if there was a way to fight inflammation naturally, without having to turn to prescription medications with difficult side effects? According to Harvard Health Publishing, some of the best anti-inflammatory compounds can be found not in your local pharmacy, but in the grocery aisle.

“Many experimental studies have shown that components of foods or beverages may have anti-inflammatory effects,” explains Dr. Frank Hu, Professor of Nutrition and Epidemiology at Harvard’s School of Public Health. Anti-inflammatory food also helps individuals to maintain a healthy weight – something important, since weight gain is a risk factor for inflammation. However, even when studies controlled for obesity, the effects of inflammation remained: “Some of the food components or ingredients may have independent effects on inflammation over and above increased caloric intake,” Dr. Hu says.

So, what are these anti-inflammatory foods that you can grow at home? Check out the full list, below!

1. Tomatoes

Tomatoes were first on Harvard Health Publishing‘s list of anti-inflammatory foods. According to Healthline, tomatoes are an excellent source of lycopene, an antioxidant with anti-inflammatory properties. Studies have also shown that lycopene may be beneficial for reducing pro-inflammatory compounds related to several types of cancer. Another study found that women with excess weight who drank tomato juice significantly decreased their inflammatory markers.

Tomatoes are also some of the easiest plants to grow. I grew up in Southwestern Canada, an area that isn’t exactly known for warm weather or sunshine. Despite the climate, our family was able to easily grow cherry tomatoes on our small, north-facing balcony during the spring and summer. Now that I live in Southern California, tomatoes grow even more abundantly, and we’re growing both cherry and heirloom varieties.

Pro tip- if you’re looking to increase lycopene absorption, consider cooking your tomatoes in olive oil. This is because lycopene is a carotenoid, which is a nutrient that is better absorbed in combination with a fat.

This leads us to the next item on our list…

2. Olives

Olives are rich in monounsaturated fats, which are heart-healthy fats that combat damaging inflammation. It’s no wonder then, that olives and olive oil are staples in the mediterranean diet, a healthy eating lifestyle followed by many supercentenarian communities.

Olives and olive oil also contain oleocanthal, an antioxidant that has been compared by scientists to ibuprofen, the nonsteroidal anti-inflammatory drug (NSAID) commonly taken to combat pain and inflammation. Extra virgin olive oil has even more anti-inflammatory benefits compared to more refined types of olive oil.

Olive trees grow best in a subtropical, mediterranean climate in which winters are mild and summers are long, dry and warm. The best climate for olive trees would be zones 10 and 11, though certain varieties of olive trees can tolerate zones 8 or 9. Then, once you’ve grown olives, you can use an oil press machine to extract the oils from the pitted fruit. We live in zone 10a and are currently growing an olea europaea, which is the European variety.

Of course, if you don’t live in an ideal climate for growing olives, then not to worry – olives and extra virgin olive oil are commonly found in grocery stores all over the world.

3. Leafy Greens

Green, leafy vegetables are next up on the list. Spinach, kale and collard greens are all easy-to-grow vegetables that possess powerful, anti-inflammatory properties. According to the Arthritis Foundation, these vegetables are high in vitamins like A, C and K which protect your cells against damaging free radicals. They are also high in calcium, which helps promote bone health.

In our garden, we’re currently growing spinach and red chard. Not only do these vegetables grow extremely fast, they also are quite hardy across different climates, and produce an abundant, constant harvest. Plus, leafy greens aren’t just for salads – you can throw them in your smoothie or protein shake, in soups and stews, stirfries, and even scramble them up with eggs. The possibilities are endless!

3. Cruciferous Vegetables

Cruciferous veggies include broccoli, cauliflower, cabbage, brussels sprouts, radishes, rutabaga, turnips, kohlrabi, watercress and bok choy. These vegetables have many of the vitamins and minerals found in other leafy greens, plus the added benefit of a phytochemical called sulphoraphane, which has been shown to block the inflammatory process, and may slow cartilage damage in osteoarthritis (OA), according to studies done on mice.

In lab studies, sulphoraphane has also been shown to stimulate enzymes in the body that detoxify carcinogens before they can damage one’s cells. Two other compounds found in cruciferous vegetables called indole 3-carbinol and crambene are also believed to activate detoxifying enzymes.

Cruciferous vegetables belong to the brassica family, and are best suited to regions with mild summers, cool springs and fall temperatures. This means that you don’t have to live in a tropical or subtropical area to be able to grow these anti-inflammatory foods.

4. Berries

Berries contain antioxidants called anthocyanins, which are compounds that have anti-inflammatory effects and may reduce your risk of disease. Studies have shown that people who ate berries consistently had lower levels of certain inflammatory markers in their blood. Other studies have shown that individuals who consume berries also had higher levels of natural killer (NK) cells that kept their immune system functioning properly.

Though many different varieties of berries exist, the most common are strawberries, raspberries, blueberries and blackberries. While many berry varieties are native to the wet Pacific Northwest, berries like strawberries can be successfully grown in drier climates like California and Mexico when given enough water. Here in Southern California, we have been able to successfully grow both strawberries and blueberries during the wetter winter months, and recently planted raspberry and blackberry bushes as well.

5. Mushrooms

Mushrooms contain a property called phenols, which have been shown to provide protection against damaging inflammation. Other anti-inflammatory properties found in mushrooms include polysaccharides, terpenoids, phenolic compounds, and many other low molecular weight molecules. Lion’s mane mushrooms have also been found to reduce low-grade, chronic inflammation linked to metabolic disorders like obesity. Thanks to its healing properties, fungi has often been used in traditional medicine across different parts of Asia and Africa.

Some easy-to-cook mushroom varieties include white button, crimini, portabella, oyster, lion’s mane, shiitake, morels and truffles. Though you may be thinking, ‘how can I grow mushrooms in my home garden?’ It’s actually easier than you think! We have used a mushroom grow kit from Back to the Roots to grow both oyster mushrooms and lion’s mane mushrooms at home in as little as two weeks!

6. Grapes

Grapes, like berries, also contain high levels of anthocyanins, which have anti-inflammatory effects. Consumption of grapes has been shown to reduce the risk of many conditions, including diabetes, heart disease, Alzheimer’s, and eye disorders. Grapes are also a staple in the mediterranean diet, as well as moderate levels of heart-healthy red wine. In fact, cannonau red wine has touted for its antioxidant benefits by supercentenarian researchers in the blue zones of Italy and Greece, due to its artery-scrubbing flavonoids.

Grapevines grow best in areas with long, warm summers and rainy winters. This is why only certain parts of the world are known for producing the best grapes for wine-making: the Bordeaux region of France, Tuscany, Italy, the Napa Valley in California, La Rioja in Spain, the Colchuaga Valley in Chile, and the Okanagan Valley in British Columbia, Canada. While I don’t anticipate that we’ll be making any wine at home, we are growing both a red and green grapevine in our California garden, and so far, both have taken off quite well.

7. Turmeric

Last but certainly not least, turmeric is one of the best plants to combat inflammation. This is because turmeric contains a property called curcumin, a powerful, anti-inflammatory nutrient found to help those suffering from arthritis, diabetes, and other conditions causing joint pain.

Turmeric resembles a root vegetable, and once harvested, it can be dried out and ground to make a spice. Turmeric is commonly used in South Asian and Middle Eastern cuisines. Being part East Indian myself, I know that it’s a staple in Indian curries, as well as in Ayurvedic medicine, which has been practiced for thousands of years in India.

However, many individuals with joint pain opt to take curcumin supplements, rather than grow turmeric at home or buying the spice at the grocery store. This is because it can be challenging to get enough curcumin through eating turmeric, unless you consume a lot of it. Plus, curcumin has been found to be more easily absorbed when taken in combination with piperine, a compound found in black pepper. So the benefit of taking a curcumin supplement is that it often has piperine added to aid absorption.

Do you grow any of these anti-inflammatory plants in your home garden? Let us know in the comments below!

Please note, this content and any products cited in it are for informational purposes only. Autoimmune Warrior does not provide medical advice, diagnosis, or treatment.

Top 5 Must-Have Products for Dry Eye | Sjogren’s Syndrome Series

Woman who suffers from dry eye disease Sjogren’s Syndrome uses eyedrops to relief dry eye symptoms. Image courtesy of Verywell Health.

As many of my subscribers know, I have an autoimmune disease called Sjogren’s Syndrome. One of the main symptoms of Sjogren’s is dry eyes, among many other things.

While those who don’t have dry eyes may not think that it’s a big deal, us dry eye sufferers know that even a small amount of eye dryness can wreck havoc on your health and lifestyle. According to the Mayo Clinic, chronic dry eyes can cause an array of issues, including discomfort and irritation, which could feel like burning, itching or like an eyelash or other foreign object is stuck in your eye. Other symptoms include blepharitis (meibomian gland dysfunction), eyelids turning inwards (ectropion) or outwards (entropion), eye infections, eye inflammation, corneal ulcers and other eye abrasions. In severe cases, dry eye can even result in vision loss.

That’s why it’s imperative that if you suffer from dry eye, that you find ways to ensure your eyes are adequately hydrated so that you can minimize the impact of dry eye symptoms. In this blog post, I wanted to share the products that have worked for me in helping to reduce my Sjogren’s-related dry eye symptoms.

1. Artificial Tears

One of the main products that I use daily for dry eye relief are artificial tears. These over-the-counter eyedrops are similar to the ones that can be found in a small bottle, but instead, they’re packaged in individual vials and are preservative-free.

When I was first diagnosed with Sjogren’s, my ophthalmologist recommended that if I was using eyedrops more than four times a day, it was imperative that I use a preservative-free eye drop brand to reduce the possibility for a toxic or allergic reaction to the preservatives. As a result, I now exclusively use preservative-free artificial tears. There are many over-the-counter brands available, but my favorite by far is Refresh Artificial Tears.

2. Eye Mask/Heat Compress

During my ongoing battle with dry eye disease, I developed a condition called blepharitis. According to the American Optometric Association (AOA), blepharitis is an inflammation of the eyelids, in which they can become swollen, itchy, red, and irritated.

As a result, I frequently use heat compresses on my eyelids to relieve the swelling and inflammation. By using a face towel soaked in warm water, I was able to not only decrease the swelling, but also to clean my eyelids, which can become even more clogged with dandruff-like scales when you have blepharitis.

More recently, my ophthalmologist recommended that I look into purchasing a Bruder mask, which are eye pads that can be easily heated up in your microwave oven, and then placed on your eyelids. This spa-like heat compress is both washable and reusable.

Bruder Moist Heat Eye Compress | Microwave Activated. Relieves Dry Eye

3. Eyelid Scrub

In an effort to further reduce the blepharitis symptoms I experience, I also use an eyelid scrub. The specific brand I use is called OcuSoft Lid Scrub, and it comes in a variety of types, from regular wipes to a ‘plus’ formula for those with extra sensitive eyes. The lid scrub helps to remove any debris stuck in my eyelids and eyelashes, which helps to further decrease the swelling and irritation that I experience as a Sjogren’s patient.

If you don’t like using individual wipes, OcuSoft also offers a pump option so that you can pump the eyelid scrub directly into your hand and wash your eyes with it. This makes it easy to incorporate into your daily wash-and-go routine.

OCuSOFT Lid Scrub Pre-Moistened Pads

4. Humidifier

The next must-have item for dry eye patients is a humidifier. A humidifier is an indoor device that releases a humidifying mist into the air, to help increase the moisture levels in your immediate environment. To tell you the truth, I didn’t know humidifiers existed until I moved to the Southwest United States – here in the desert-like climate, everyone seems to have one!

Humidifiers are great because they don’t involve applying something directly to your eyes. They’re also easy to refill with water, and you can buy a large one for a big room, or a smaller one that sits on your desk for your home office or bedside table. Plus, you don’t need to leave it on all day long – I find just running my humidifier for 20 minutes makes my immediate space comfortable enough that I don’t need to use it for the rest of the day. Some patients find that turning on their humidifier at night helps them to sleep comfortably, since eyes tend to be drier at night, when your tear glands decrease tear production while you’re asleep.

Crane Drop Ultrasonic Cool Mist Humidifier

5. Omega-3 Supplements

While the exact effects of vitamins and minerals on eye health are up for debate, many years ago, my optometrist at the time did recommend taking omega-3 fish oil supplements daily for my eye health. He explained to me that while dry eye is often a tear production issue, it could also be a tear evaporation issue. This is because another component of healthy tears is having a sufficient high-quality oil, called meibum, in the water layer of your eye’s surface to prevent your tears from evaporating too quickly.

Based on his recommendation, I take omega-3 supplements derived from fish oil. The supplements are over-the-counter rapid release soft gels from my local pharmacy- nothing too fancy, but they do the job!

Beyond using these five products, there are other initiatives I’m taking to reduce my dry eyes; for example, I’m getting the punctal plugs re-inserted into my tear ducts next month (after one fell out). However, these five products alone have made a big difference in improving my quality of life with Sjogren’s Syndrome and dry eye disease, and I hope that they work for you too.

Nature’s Bounty Fish Oil (360mcg of Omega-3) Rapid Release Softgels

Remember, always talk to your doctor before beginning a new medication, regimen, or treatment plan. Please read Autoimmune Warrior’s product recommendations disclaimer on our About Us page regarding our participation in Amazon’s Associates Program.

My New Hidradenitis Suppurativa Treatment Plan

Last year, I switched health insurance plans, and as a result, the dermatologist that I was seeing to treat my hidradenitis suppurativa (HS) was no longer in-network. So, I had to find a new physician. I found a new dermatologist in my area that was covered under my health insurance plan, so I made an appointment and saw her for the first time last week.

My last physician – who diagnosed me with this chronic autoimmune skin condition – had been treating my hidradenitis by giving me cortisone (steroid) injections. While this was effective to control the inflammation and pain caused by my HS boils, it wasn’t really a long-term solution. I had also been prescribed clindamycin lotion to put on my hidradenitis lesions after showering, and over-the-counter Hibiclens, a wash that medical staff use to ‘scrub in’ in order to prevent any infections from occurring. However, neither of these topical solutions have gotten rid of my HS boils.

My new dermatologist was very caring, and didn’t rush me at all. She suggested that I use a new topical solution called resorcinol. Resorcinol is not covered by my health insurance, since it’s not made by a typical pharmacy, but rather, a compounding facility. While this is a downside, I did some research about the medication, and according to the Journal of the American Academy for Dermatology (JAAD), a 2010 study found that when patients with Hurley stage I or II HS used topical 15% resorcinol twice daily for 30 days, they saw a ‘marked decrease in pain and mean duration of the lesions’.

Below are the side-by-side results from the study. The first left-side image (A) is the patient’s baseline state, the second (B) is seven days into treatment, and the third image (C) is 30 days into the treatment. The right-side images (D, E, and F) are the respective lesions shown via ultrasonography.

Image courtesy of the JAAD (Journal of the American Academy for Dermatology).

Beyond the resorcinol, I spoke with my dermatologist about a medication called spironolactone for hidradenitis suppurativa treatment. Spironolactone is commonly used to treat acne and other similar skin disorders. Although HS is sometimes referred to as ‘acne inversa’, anyone with the condition knows that it’s not acne – not even close! That being said, HS may be similar to acne in the sense that it may be affected by hormones. Plus, a 2017 study of 46 women with HS found that acne and polycystic ovarian syndrome (PCOS) were the most commonly reported comorbidities with hidradenitis. The same study found that spironolactone was effective, even in small doses, for managing patients’ pain and inflammatory lesions.

Though I haven’t decided whether or not to move forward with spironolactone treatment yet, I thought it was interesting that there was a potential connection between HS and hormones, especially since I myself have adult acne and have had multiple ovarian cysts in the past. Plus, I have Sjogren’s Syndrome, an autoimmune disease that may also have a hormonal component. I do notice that my hidradenitis boils do worsen on a pre-menstrual basis.

I also discussed with my dermatologist getting laser hair removal in the areas most commonly affected by HS – the groin and underarms. She did say that laser hair removal does help with the follicular occlusion aspect of the disease. Obviously, there are drawbacks – for example, laser hair removal is almost impossible to do in patients with Hurley stage III of the disease, because it’s simply too painful. It’s also not usually covered by insurance, since it’s considered a cosmetic procedure, rather than a medical one. But, it’s another option that I want to consider since I’m still at stage I of the disease, and would rather have laser hair removal than wide-excision surgery.

Do you have hidradenitis suppurativa? If so, what treatments have been most effective for you? Let me know in the comments below!

Toni Braxton Opens Up About Battle with Lupus

Award-winning singer Toni Braxton, 53, has struggled with the autoimmune condition lupus for over a decade.
Award-winning singer Toni Braxton, 53, has struggled with the autoimmune condition lupus for over a decade. (Photo courtesy of Rich Fury/Getty Images)

Legendary singer and songwriter Toni Braxton sat down with publication The Grio to detail her ongoing battle with systemic lupus erythematosus, known as lupus for short. The seven-time Grammy award winner was diagnosed with the autoimmune disease in 2008, after she suffered a heart attack on stage during a live performance in Las Vegas.

“The doctors told me I could never perform again. I have systemic lupus. My lupus loves my heart. It loves my microvascular system. It loves my blood, so I get blood clots,” she explained. “The chronic pain and fatigue associated with it were overwhelming for me initially.”

The autoimmune condition affects more than 5 million people worldwide, including 1.5 million Americans. Lupus is known to affect the body’s major organs, including the heart, lungs, skin and more. Beyond the physical symptoms, however, Braxton said the disease took a toll on her mental health too.

“When I was first diagnosed, I felt that I had no one to help me,” she said. Braxton continued, “I always tried to be vocal and educate people. I remember being afraid and I don’t want anyone to feel that feeling I had.”

Though the condition initially caused her to pause her career, Braxton found relief with CBD, the compound found in medical marijuana, with helping to manage her chronic pain.

“I found that Uncle Bud’s doesn’t have THC, the stuff that makes you high. More importantly, with my body being inflamed and so on, it offers anti-inflammatory properties and for me, I need that.” She continued, “It can change your life because sometimes you just need hope. I’m so glad they finally made it legal. It’s a great thing because of the healing properties for people like myself.”

As for her advice on how to cope with having lupus, Braxton commented: “It’s not your fault. It’s nothing you did. It’s just what it is. It’s just what your body is or has become. There’s nothing you could have done to change it.”

Since her lupus symptoms have improved, she has returned to singing and has released a new album, Spell My Name in August 2020. She’s also been busy filming the reality TV series, Braxton Family Values.


    

Rare Autoimmune Disease Claims Australian Woman’s Life

Chris Ferguson (left) pictured with his wife Marcia Ferguson-Roa of Australia, were avid travelers prior to her devastating autoimmune diagnosis. Photo courtesy of the Sydney Morning Herald.

Australian couple Marcia Ferguson-Roa and her husband, Kris Ferguson, enjoyed spending their time sailing in their dream yacht. But in October of 2020, Marcia began to experience a myriad of strange symptoms that wouldn’t go away, and that kept her from her beloved pastime of sailing.

She experienced more fatigue than usual, and had a persistent dry cough. She also had ulcerating marks appear on her forehead and other parts of her body. Doctors weren’t able to determine what was wrong, until Marcia ended up in the hospital a month later.

That’s when she was diagnosed with a rare autoimmune disease called dermatomyositis (DM). Dermatomyositis is rare, affecting just nine in 1 million people worldwide. The specific type of dermatomyositis that Marcia had, however, was even less common; named MDA5 antibody positive dermatomyositis, it is more life-threatening than other forms of DM, since it affects the lungs. Only 5% of those with DM have this particular variation, making it extremely challenging to diagnose.

Myositis is a group of autoimmune disorders that cause muscle inflammation, and dermatomyositis also affects the skin. The Myositis Association Australia states that 1 in 200,000 people have some form of myositis. Unfortunately, some of the symptoms, such as muscle weakness and fatigue, are often overlooked as just the normal signs of aging, Christine Lowe, the Association’s President said.

Unfortunately, though Marcia fought hard against her disease, her condition worsened and doctors were forced to put her in a medically-induced coma. She never woke up, and one week later, she was pronounced dead. Her husband Kris was devastated to learn of her passing after almost 40 years of marriage.

“I told her I loved her and that we would talk tomorrow,” he said. “There was no tomorrow.”

Dr. Girgis, the head of rheumatology at St. Vincent’s hospital where Marcia was hospitalized, said more research dedicated to autoimmune diseases is necessary to find the root cause of why the body attacks its own tissues.

Interestingly enough, another man named Abu Jalil was treated for the same rare variation of dermatomyositis that Marcia had at the same hospital in Australia. When the local paper published a story about Abu’s plight, the community raised over $180,000 for his expensive treatment and medications, which aren’t covered by the country’s National Benefits Scheme. Thankfully, Abu’s condition is improving.

To learn more about Marcia’s battle with dermatomyositis, read the full article in the Sydney Morning Herald.

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Woman with Rare Autoimmune Disease Undergoes High-Risk Treatment

Shelley Clark-Collins and her partner Mark Doyle have travelled to Ottawa, Ontario so that she can receive an innovative treatment for her rare autoimmune disease (Photo: CBC News)

Shelley Clark-Collins, a 56-year-old woman from Saint John, New Brunswick, Canada, is looking to undergo a high-risk procedure to treat her rare autoimmune disease.

Clark-Collins lives with dermatomyositis, an autoimmune condition in which her body’s own immune system mistakenly attacks her healthy cells, causing inflammatory, painful and degenerative changes to her skin and muscles. According to Johns Hopkins Medicine, symptoms of the disease include rashes and spotting on the skin, swelling, stiff joints, muscle weakness and aches, difficulty swallowing, voice changes, fatigue, fever, and weight loss. Dermatomyositis can also cause other autoimmune and connective disease conditions, like lupus, and increase the risk of developing cancer.

Dermatomyositis is extremely rare, affecting fewer than 10 in 1 million people, according to an estimate from the National Organization for Rare Disorders (NORD). The disease most often occurs in adults ages 40-60, and juvenile dermatomyositis occurs most commonly in children and youth between the ages of 5 and 15.

Because of its rarity, Clark-Collins had a difficult time getting diagnosed. As a hairdresser, she suddenly found that she was so weak, she could no longer hold up a blow dryer or stand for long periods of time. She was falling down frequently, couldn’t get out of the bathtub, or lift her bed sheets. She was later diagnosed with multiple sclerosis (MS) after a neurologist found a lesion in her brain.

“But what he was treating me with [for MS] wasn’t working,” explained Clark-Collins. After seeing numerous specialists, she was diagnosed with “everything but the kitchen sink,” she recalls, including cancer, arthritis, and Grave’s disease. A dermatologist even told her that she should see a psychiatrist for Empty Nest Syndrome as a result of her kids moving out.

Despite these setbacks, Clark-Collins was eventually correctly diagnosed with dermatomyositis through blood work and muscle biopsies. Since then, the disease has affected her health and wellbeing substantially. Prior to developing the disease, she was an avid marathon runner and outdoor enthusiast, enjoying kayaking, rock climbing, and skiing. Now, she says that walking to her car is a feat. She sleeps in a chair because getting in and out of bed is too difficult with her muscle weakness. She has difficulty swallowing and talking, and has suffered irreparable damage to her heart and lungs. She’s had a stroke, blood clots, and a life-threatening sepsis infection.

Dr. Harold Atkins is pioneering a new treatment designed to help patients with dermatomyositis, a rare autoimmune disease.

However, Clark-Collins has found hope in a new procedure being pioneered by Ottawa, Ontario-based Dr. Harold Atkins. The innovative procedure is a combination of intense chemotherapy and a blood stem cell transplant. The chemotherapy will destroy her diseased immune system, and the stem cells from her bone marrow will be removed, purified and re-injected into her body. It’s a risky and aggressive procedure that aims to reset her immune system – but there are no guarantees that it will work. With the COVID-19 pandemic still raging, re-setting her immune system also leaves her extremely vulnerable to contagious diseases, meaning she could easily die should she catch the virus.

Despite the risks, Clark-Collins says she’s “very excited,” and is looking forward to the possibility of reclaiming her life. As a mother of two adult children, she says “it’s been hard on [my kids] to watch me decline like that.”

Plus, she’s running out of options. She has developed a resistance to several of her medications already, she can’t take large doses of steroids for much longer, and her opioid painkiller can cause an addiction. She also goes to the hospital once a week for plasmapheresis, a procedure in which her plasma (the liquid part of the blood) is separated from her blood cells, and is replaced with new plasma. But this treatment isn’t guaranteed to work forever.

With this new treatment, the hope is that her dermatomyositis will go into remission. Clark-Collins says she dreams of being able to regain her independence, start running again, and just to be able to hug her children without excruciating pain.

“Just maybe [I’ll] get a little big of my life back,” she said hopefully.

To learn more about Clark-Collins’ battle with dermatomyositis, read the full story on CBC News.

My #ThisIsSjogrens Awareness Campaign Submission

Did you know that April is Sjogren’s Awareness Month? That’s right, according to the Sjogren’s Foundation, April was declared Sjogren’s Awareness Month in 1988 when New York Congresswoman Louise Slaughter read it into the Congressional Record.

The 2021 theme for this awareness campaign is Coming Together to Conquer Sjogren’s. When you post on social media or other digital platforms about Sjogren’s, use the hashtag #ThisIsSjogrens to highlight your personal experience as part of the campaign. The purpose of the campaign is to raise awareness about the complexities of the disease, and provide a voice to the 3 million+ Americans (and many more worldwide) who live with it every day.

As April is fast approaching, I wanted to share my personal #ThisIsSjogrens submission with the Autoimmune Warrior blog followers. Read my submission, below!



Name: Isabel

Current age: 28 

Age when diagnosed: 20

Please finish with the following sentence: “Since I was diagnosed with Sjögren’s, I have learned…”
Since I was diagnosed with Sjogren’s, I have learned how important self-care is. Although you can’t let the disease rule your life, you must also learn to listen to your body and take the needed time to rest and recharge.

What are your 3 most difficult symptoms?
My three most difficult symptoms are eye dryness, mouth dryness and joint pain, although I also experience fatigue, brain fog and peripheral neuropathy. 

What are ways that you cope with your most difficult symptoms?
For eye dryness, I use artificial tears eye drops several times a day, and I also take prescription eye drops to reduce inflammation in my tear glands. I also had punctal plugs inserted in my tear ducts to increase my tear retention. For mouth dryness, I use artificial saliva and take pilocarpine, a medication that stimulates saliva production, and I drink plenty of water throughout the day. For joint pain, I take a prescription medication that reduces inflammation and pain in my joints. 

What is one of the ways that you’ve been able to effectively cope with symptoms during this past year in the pandemic?
During the past year of the pandemic, I have taken more time to rest which is helping to reduce my fatigue levels. Also, since I now work from home, I’m able to use a humidifier to humidify my home office environment, which helps with my dryness symptoms.

What is the best tip you would share with another Sjögren’s patient?
If I had to give a tip to another Sjogren’s patient, I would say to find a team of medical professionals who are familiar with the disease. Many medical professionals think that Sjogren’s is just dry eyes and dry mouth, and don’t realize that there is a lot more to the condition and the other symptoms it can cause.

How does the Sjögren’s community and the Foundation give you strength?
The Sjogren’s community and Foundation help to connect me with others who have the disease, so I can build a community around me of other patients who understand what I’m going through. 

What do you wish people understood about Sjögren’s and how it affects you?
I wish people understood how much having a chronic illness like Sjogren’s impacts my health and day-to-day wellbeing. I might not be able to do things that I once could due to this disease, but I won’t let that stop me from achieving my personal and professional goals.


To participate in the #ThisIsSjogrens campaign, answer the questions in the Sjogren’s Foundation questionnaire and email your answers to etrocchio@sjogrens.org.

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March is Autoimmune Disease Awareness Month

According to the American Autoimmune & Related Diseases Association (AARDA), March is officially Autoimmune Disease Awareness Month (ADAM)! During this month, the organization works to raise awareness about autoimmune diseases among the general public. With increased awareness about autoimmune diseases, the AARDA says that they will be able to secure more funding for medical research, new treatment options, and improved patient diagnostics.

According to the AARDA, there are over 100 known autoimmune diseases, which are responsible for causing widespread chronic illness and pain. While many individuals have heard of at least one autoimmune disease, like rheumatoid arthritis, lupus, multiple sclerosis, type 1 diabetes, or Crohn’s disease, few members of the general public know that these conditions are autoimmune in nature, and all stem from the commonality of an overactive immune system.

There is also widespread misinformation about the term ‘autoimmune’. I once read on the Reddit forum r/autoimmune about a woman who, during a doctor’s appointment, told a nurse that she had an autoimmune disease. The nurse thought that this meant that the patient had HIV/AIDS, which is not an autoimmune disease, but rather an immunodeficiency caused by a virus. These misconceptions about autoimmune disease are another reason why it’s important to raise awareness and educate the public – and even healthcare professionals – about this cause.

While the exact number of autoimmune disease patients is unknown, it’s estimated that autoimmune conditions impact over 24 million Americans. An additional 8 million Americans have auto-antibodies, blood molecules that may predispose them to developing an autoimmune disease in the future. This isn’t counting the many individuals who go undiagnosed as a result of their symptoms being dismissed, a misdiagnosis, or due to their healthcare provider lacking knowledge about autoimmune disease.

Autoimmune diseases are also a leading cause of death and disability. Dr. Anthony Fauci, a leading allergy and disease expert, estimated back in 2001 that autoimmune disease treatment costs in the US exceeded $100 billion annually. While this may seem like a staggering figure, it’s possible that the true cost is much higher, since, as noted above, many individuals go undiagnosed or are misdiagnosed, and new autoimmune diseases are being discovered with each passing year. Furthermore, a more recent 2020 study showed that the incidence of autoimmune disease is on the rise in the US – so these cost figures (which are now 20 years old), are most likely continuing to increase.

The fact that autoimmune diseases pose an extreme burden on our healthcare system is just another reason that it’s important for the general public to be educated about these conditions, and why more resources need to be dedicated towards research and finding a cure.

So what can you do to help? If you or someone you love has an autoimmune disease, consider raising awareness (with the patient’s permission, of course), by posting about it on social media with the hashtag #ADAM for Autoimmune Disease Awareness Month. By sharing your story or the stories of others, you can raise awareness and be a voice for the millions of people suffering from autoimmune diseases worldwide.

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Study Reveals Increased ADHD Risk in Children Born to Mothers with Autoimmune Disease

Australian researchers have found a potential link between ADHD in children and maternal autoimmune disease. Image courtesy of Kids’ Health.

An Australian study has found a potential link between autoimmune disease and attention deficit hyperactivity disorder (ADHD).

The study took place over a decade, from 2000 to 2010, following more than 63,000 children born at full-term in New South Wales, Australia. Study author Timothy Nielsen, a PhD candidate at the University of Sydney, said that they were able to identify 12,610 mothers who had one or more of 35 common autoimmune diseases, such as type 1 diabetes, celiac disease, Crohn’s, psoriasis, multiple sclerosis, lupus, Sjogren’s or rheumatoid arthritis, to name a few. The children were identified as having a diagnosis of ADHD, or a prescription for stimulants.

The study also included a meta-analysis of existing research on this topic. The combined results of the longitudinal study and the meta-analysis found that when the mother had a diagnosis of any autoimmune disease, [this was] associated with a higher risk of ADHD in their child at later ages.

While researchers don’t know the exact reason why women with autoimmune disorders are more likely to have children with ADHD, researchers do have a hypothesis. It’s believed that maternal autoantibodies, which attack the mother’s own tissues, cross the placenta into the unborn fetus during pregnancy. Inflammatory molecules, therefore, could potentially do the same. These molecules could, in turn, alter fetal brain development, either by altering epigenetic markers, which turn certain genes on or off, or by impacting the function and formation of synapses, which allow nerve cells to communicate.

Nielsen explained, “These changes may lead directly to ADHD symptoms, or they may make the child more vulnerable to environmental risk factors.” He continued, “Our team is currently working on research into the causal mechanisms that underlie the association between autoimmune disease and ADHD, which may shed light on whether the severity of disease, symptoms, use of medications or other inflammatory factors modifies the risk of ADHD.”

This is the first study that explores the correlation between maternal autoimmune disease and the risk of ADHD in children. Other research has shown a link between autoimmune disease in mothers and other neurodevelopmental disorders, such as autism, obsessive-compulsive disorder (OCD), tics and Tourette’s syndrome.

Read the original study published in JAMA Pediatrics here: Association of Maternal Autoimmune Disease with ADHD in Children.

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Woman Describes Battle with Neuromyelitis Optica (NMO)

Cealie Lawrence (right) has been battling a rare autoimmune disease affecting her eyes, spinal cord and brain. The symptoms were so debilitating, she moved in with her son Robert (left) to cope. Image courtesy of The Columbus Dispatch.

60-year-old Cealie Lawrence was working as a server at a local restaurant in the Columbus, Ohio area when she experienced a sudden change in her vision.

“I couldn’t see anything but darkness and a little light,” Lawrence said. “I panicked.”

Essentially blind in both eyes, she was taken by her co-worker to a local hospital where healthcare workers ran numerous tests on her, including a spinal tap. Unfortunately, the cause of her sudden blindness couldn’t be found – so she spent a week in hospital.

Lawrence was eventually diagnosed with neuromyelitis optica spectrum disorder (NMOSD), a chronic autoimmune disease in which the body’s own immune system attacks the optic nerves, spinal cord, and the brain. The condition can lead to blindness and even paralysis. It is also known as neuromyelitis optica (NMO) and Devic’s disease.

Dr. Geoffrey Eubank, Medical Director of the Mid-Ohio MS Center at OhioHealth Neurological Physicians, stated, “We know how bad [neuromyelitis optica] can be. We know it can put people in wheelchairs, make them blind, really impact them…This is a disease that frightens us.”

According to the National Multiple Sclerosis Society, there are an estimated 4,000 people living with NMOSD in the United States, and 250,000 living with the condition worldwide. Neuromyelitis optica is similar to multiple sclerosis (MS), since it’s also an autoimmune disease that impacts the central nervous system and disrupts the flow of information between the body an the brain, leading to permanent damage and deterioration of the nerves.

Eighty percent of those diagnosed with NMO are women. It occurs most commonly between the ages of 40 and 50, however, it’s been discovered in children as young as 3 and adults as old as 90. Research has found that demyelinating diseases are more common among certain populations, such as Africans, Asians and Native Americans.

As for Lawrence, her eyesight did slowly return after her stay in hospital, but she started suffering paralysis from the neck down months later. She then started physical and occupational therapy, which eventually allowed her to walk again. Despite this win, Lawrence’s NMO continued to relapse, and over a period of seven years, she made over 100 hospital visits.

“It was really bad,” she said, noting that the symptoms of her chronic illness were so debilitating, that they caused her to move in with her son Robert for help.

Five years ago, however, Lawrence found a ray of hope; she was enrolled in a clinical trial at OhioHealth for a new drug called Enspryng, a promising treatment for NMOSD, that’s been shown to reduce attacks of the disease. Since receiving the treatment, Lawrence says she hasn’t experienced a single NMO relapse.

“It’s a miracle,” she said of the drug Enspryng, which was officially approved by the US Food and Drug Administration in August 2020 for the treatment of NMOSD. This makes the drug the third approved treatment for the disorder, in addition to Soliris, which was approved in June 2019, and Uplizna, approved in June 2020.

“Thank God for the development of this medication because I truly believe it’s going to help a lot of people in my situation,” she said. “This is my second chance at life and [to live] more abundantly.”

Lawrence has since been able to move out of her son’s place and is now living independently.

“I was just existing before. I take care of me now,” she said proudly, noting that she is now enjoying her passion for cooking, playing with her grandchildren, and is even going back to school to pursue a degree in counseling.

“That’s a passion of mine because a lot of individuals, especially my age, that are suffering in silence,” she said. “I believe I could be a big influence and a big help to them.”

Lawrence credits her recovery to having a determined attitude and her faith in God.

“If I didn’t have God in my life, I truly feel that I wouldn’t be here right now,” she explained. “I had faith all along that even when I was paralyzed, lying in that hospital bed on my back, not being able to feed myself or do anything for myself…I maintained that I was not going to be flat on my back for the rest of my life.”

To learn more about Lawrence’s remarkable journey with NMO, read her full story in The Columbus Dispatch.

Can I get the COVID-19 vaccine if I have an autoimmune disease?

Is the COVID-19 vaccine right for autoimmune disease patients?
The COVID-19 vaccine is expected to roll out to members of the public in early 2021. Image courtesy of the BBC.

As the COVID-19 vaccine rolls out across the nation, many members of the public are wondering if getting vaccinated against the coronavirus is right for them. More specifically, those with autoimmune disorders, a disease class in which one’s own immune system mistakenly attacks the body’s own tissues, wonder if they are candidates for the COVID-19 vaccine.

Dr. Shafinaz Akhter, Physician at Chester County Hospital in Philadelphia, PA, states, “Our advice has always been that there is no harm to getting it. It is very unlikely that you’re going to have an adverse reaction or worsening symptoms from your underlying disease based upon receiving the vaccination.” For this reason, she says that at her hospital, they are recommending that anyone with an autoimmune disease, such as lupus, rheumatoid arthritis, or Crohn’s, get vaccinated.

Furthermore, Dr. Akhter adds that many autoimmune disease patients take immunosuppressants or other immune-modulating prescription drugs, which are medications designed to decrease immune system overactivity and the damaging inflammation that comes along with it. These medications may reduce the vaccine’s ability to stimulate your body to mount an immune response against the virus. For this reason, it’s important to speak with your healthcare provider regarding the timing of when you take your medications and when you receive the COVID-19 vaccine. Examples of such medications include methotrexate or rituximab.

Dr. Anthony Fauci, the country’s top infectious disease expert, weighed in on the subject, stating, “It is clear that if you are on immunosuppressant agents, history tells us that you are not going to have as robust a response as if you had an intact immune system that was not being compromised. But some degree of immunity is better than no degree of immunity. So, for me, it would be recommended that these people do get vaccinated.”

The CDC, for its part, has stated that those with autoimmune conditions may receive the COVID-19 vaccine, while also acknowledging that no data currently exists with regards to the safety of these vaccines for autoimmune disease patients. 

The CDC adds that it is expected that the risk of the COVID vaccine for autoimmune disease patients to be minimal, based on the vaccine’s mechanism of action. This is because none of the COVID vaccines use a live virus, nor do they include an adjuvant, which is a substance that enhances the body’s immune response to an antigen. Finally, none of the available vaccines become incorporated in your own genetic material (i.e. DNA), since they are mRNA vaccines.

As with any new medical treatment, it’s encouraged to speak with your healthcare provider before making a decision on whether or not to get the vaccine, so that they can advise you based on your specific situation. To learn more about the COVID-19 vaccines, visit the CDC website.

Are you planning to get the COVID-19 vaccine? Let us know in the comments below!

10 Facts About Scleroderma

Kristine Cruz-Munda is a scleroderma patient who shares her story living with this autoimmune skin condition. Video courtesy of CBS LA.

According to the Scleroderma Foundation, scleroderma is a chronic connective tissue disease, and is generally classified as a rheumatic autoimmune disease. In patients with scleroderma, the body over-produces collagen, reacting as if there were an injury needing repair. This over-production of collagen prevents various organs in the body from functioning normally.

While this condition is poorly understood, there is some information about the disease that we do know. Read on to learn 10 facts about scleroderma.

1. Scleroderma is more common than you think

It’s estimated that 300,000 Americans live with scleroderma. Of these 300,000 patients, approximately 1/3 live with the systemic form of the disease. However, it’s possible that the number of scleroderma patients is actually much higher, since diagnosing this skin condition can be difficult, as the disorder bears a lot of similarities to other autoimmune diseases, such as polymyositis.

2. Localized scleroderma is the first main type

The two main types of scleroderma are localized and systemic. With localized scleroderma, symptoms such as skin thickening and collagen overproduction are limited to a few places on the skin or muscles, and internal organs are usually not affected. In general, localized scleroderma is relatively mild and rarely develops into systemic scleroderma.

Morphea and linear scleroderma are two sub-classifications of this form of the disease, which appear as patches or streaks on the skin, respectively.

3. Systemic scleroderma is the second main type

In contrast to localized scleroderma, systemic scleroderma affects the connective tissue in many parts of the body, including the skin, esophagus, gastrointestinal tract (stomach and bowels), lungs, kidneys, heart, and other internal organs. It can even impact blood vessels, muscles, and joints. These tissues become hard and fibrous, which decreases their function.

There are two sub-classifications of systemic scleroderma – diffuse and limited. Diffuse scleroderma results in a rapid skin thickening across a larger portion of the skin. Patients with this form of the disease have more internal organ involvement as well. Conversely, limited scleroderma occurs when the skin thickening is less widespread, and is usually confined to the fingers, hands and face. It tends to develop slowly over time.

4. Limited scleroderma is also called CREST syndrome

Limited scleroderma is sometimes referred to as CREST syndrome, an acronym which stands for the different symptoms this condition causes:

  • Calcinosis – an accumulation of calcium deposits under the skin, which may cause pain
  • Raynaud’s – a phenomenon in which small arteries that supply blood to the skin constrict excessively in response to cold, limiting blood supply to one’s fingers and toes and changing their color
  • Esophageal dysfunction – a stiffening of the gastrointestinal tract muscles, resulting in reflux and indigestion
  • Sclerodactyly – the hardening of the skin on one’s fingers and/or toes
  • Telangiectasias – round, red spots on the skin’s surface as a result of widened small blood vessels

5. Scleroderma can affect one’s lungs

Pulmonary symptoms can occur in patients with systemic scleroderma. For example, patients may develop pulmonary hypertension, a condition in which the lung’s blood vessels narrow, which results in impaired blood flow in the lungs. This, in turn, causes shortness of breath.

6. Your gender, age, ethnicity and genetics may play a role

Scleroderma affects women up to three to four times more frequently than their male counterparts. According to the Mayo Clinic, the condition most commonly occurs between the ages of 30 and 50, although children can also develop the disease. One’s ethnic background may also influence the risk of developing the disease, the age of onset, and the severity of one’s symptoms. Although it’s believed that genetics play a role in the development of scleroderma, genetic factors are thought to only predispose a person to the disease, rather than cause it.

7. Other autoimmune issues may co-occur

Since scleroderma is an autoimmune disease, it may occur in conjunction with other autoimmune issues. According to the Mayo Clinic, between 15-20% of scleroderma patients have another autoimmune disease, such as rheumatoid arthritis, lupus or Sjogren’s syndrome. This is why it’s important for patients to get evaluated for other potential co-morbidities as well.

8. There is no cure, but treatments do exist

While there is no known cure for scleroderma, treatment options do exist to help patients manage their symptoms and to prevent further complications of the disease. For example, your doctor may prescribe steroids to help you cope with skin symptoms. Blood pressure medications may also be used to treat Raynaud’s phenomenon. Anti-acids and antibiotics can help reduce digestive issues and prevent infections. Immunosuppressants may be prescribed to reduce overactivity of your immune system and to decrease damaging inflammation. And finally, pain medications may also be used to decrease pain if over-the-counter pain medications aren’t effective enough.

9. Surgery may be necessary

In extreme cases, surgery may be required for certain scleroderma patients. For example, patients with severe Raynaud’s phenomenon in their fingers or toes may have tissues that die off or develop painful sores; consequently, amputation of these tissues may be required. Also, in patients with heavy lung involvement, a lung transplant may be necessary to help the patient breathe.

10. Scleroderma support groups are here to help

The Scleroderma Foundation offers numerous local chapters and support groups, designed to help patients connect with others living with the disease. These support groups provide a forum to share feelings, concerns, information with others, and act as a place to offer peer support and encouragement. To find your local support group in the US, visit the scleroderma chapter locator.

Do you or someone you love suffer from scleroderma? What has been your experience living with the disease? Let us know in the comments below!

The Link Between Congenital Heart Block and Autoimmune Disease

Congenital Heart Block (CHB) is a rare but serious condition that occurs more frequently in newborns born to mothers with autoimmune disease. Image courtesy of Insider.com.

What is Congenital Heart Block?

According to the National Organization for Rare Disease, Congenital Heart Block, or CHB for short, is the interference of the transfer of electric nerve impulses that regulate the pumping of the heart muscle.

As long as electrical impulses are transmitted normally between the heart’s chambers – the atria and the ventricles – the heart contracts normally, allowing for blood to be pumped throughout the body. If the transmission of the signal is impeded, the blocked electrical transmission is known as heart block, or atrioventricular (AV) block.

Though heart block can happen to anyone of any age, it is called congenital heart block if it occurs in a fetus or newborn up to 28 days old.

Why Does CHB Occur in Children Born to Women with Autoimmune Disease?

Autoimmune-associated CHB has been found in a variety of maternal autoimmune disorders, including Sjogren’s syndrome, systemic lupus erythematosus, rheumatoid arthritis, antiphospholipid syndrome (APS), mixed connective tissue disorders, and undifferentiated connective tissue disease.

It is believed that CHB may result when maternal antibodies cross the placenta, enter the fetus, and attack the fetal cardiac conduction system. The antibodies that were originally produced by the mother’s body to fight infections mistakenly recognize parts of the fetal heart’s conduction system as foreign; for this reason, the immune system attacks and damages the tissues, resulting in inflammation and scarring, which in turn leads to faulty conduction. 

What Is the Risk of Congenital Heart Block if I Have an Autoimmune Disease?

A 2017 study conducted by Chinese medical professionals Kai-Yu Zhou and Yi-Min Hua of the West China Second University Hospital, Department of Pediatric Cardiology, revealed that more than half of CHB cases (between 60 and 90%) are associated with maternal autoimmune disease.

Among the general population, CHB occurs in 1 out of every 20,000 live births – an incidence of only 0.00005%. The study found that autoimmune-associated CHB, however, occurs at much more frequent rates, affecting between 2–5% pregnancies with positive anti-Ro/SSA and La/SSB antibodies. The study also found that when a woman had a child with CHB, the recurrence rate of CHB was 12–25% for a subsequent pregnancy.

Mortality Rate & Treatment for Congenital Heart Block

The perinatal mortality rate of a newborn with CHB is up to 30%, and even higher in the presence of endocardial fibroelastosis (EFE) or dilated cardiomyopathy (DCM), which are other potential complications associated with CHB.

If CHB is detected in utero by a fetal electrocardiography (ECG) and echocardiography, your OB/GYN may prescribe an adrenocorticosteroid such as dexamethasone, which works to decrease inflammation and the number of circulating maternal antibodies in the fetus.

Once born, other studies have shown that between that 64 and 70% of CHB survivors require surgery to permanently implant a pacemaker, a medical device which stimulates the heart to contract so that it can pump blood.

How to Prevent Congenital Heart Block

A 2016 report by the American College of Rheumatology states that there are no official guidelines about the prevention, screening, and treatment of CHB due to maternal Ro antibodies.

However, in the same report, it was stated that in a survey of 330 women with autoimmune conditions, 67% were told by their rheumatologists to use hydroxychloroquine (also known as Plaquenil) to prevent CHB. In addition, 62% were told to start the drug prior to pregnancy, in order to prevent the condition from developing.

Another study published in The Journal of the American College of Cardiology stated that hydroxychloroquine reduces the recurrence of CHB below the historical rate by more than 50%, further demonstrating the promise of this drug in the prevention of CHB.

Have you or someone you love been affected by congenital heart block (CHB)? Let us know in the comments below!

Autoimmune Disease & Peripheral Neuropathy

Peripheral Neuropathy is a common complaint among autoimmune patients. Image courtesy of the Southern Regional Pain Services.

Did you know that autoimmune disease can cause debilitating nerve pain and other nervous system difficulties?

Many medical professionals are unaware that autoimmune conditions can cause a variety of neurological symptoms, or neuropathies, in patients. Though it is commonly known that autoimmune diseases are responsible for joint pain and other kinds of inflammation, nerve pain is often overlooked.

According to the National Institute of Neurological Disorders and Stroke, peripheral neuropathy refers to conditions that involve damage to the peripheral nervous system, which is the vast communication network that sends signals between the central nervous system (the brain and spinal cord) and other parts of the body. Research has shown that over 20 million Americans suffer from some form of peripheral neuropathy, of which there are over 100 known unique types!

How can autoimmune disease cause peripheral neuropathy?

Systemic autoimmune diseases that impact the entire body can cause peripheral neuropathy because of the impact these diseases have on one’s nerves. Conditions like Type 1 diabetes, lupus, Sjogren’s syndrome, and rheumatoid arthritis can all cause nerves to become compressed or entrapped as a result of inflamed surrounding tissues.

Some autoimmune diseases aren’t systemic, or body-wide, but rather, target the nervous system directly. For example, in autoimmune conditions like Guillain-Barre, multiple sclerosis (MS) and chronic inflammatory demyelinating polyneuropathy (CIDP), the immune system may go after the motor nerves, motor fibers, or the myelin sheath coating the nerves. In other instances, the small fibers are attacked, resulting in ongoing chronic pain.

How does peripheral neuropathy manifest?

Peripheral neuropathies can manifest for different people in different ways. For example, rather than a sharp, jabbing, throbbing pain, for some patients it may feel more like prickling, tingling, burning, numbness, or even a complete loss of sensation.

According to the Mayo Clinic, peripheral neuropathy can also make you feel like you’re having a sensation that you’re not; for example, feeling like you’re wearing gloves or socks when you’re not. Peripheral neuropathies can also cause you to feel pain for activities that you know shouldn’t cause pain, such as pain in your feet after they’re underneath a blanket.

What you can do about your autoimmune nerve pain

Medical Interventions

If you have autoimmune nerve pain, don’t suffer in silence. Talk to your primary care physician and see if they can refer you to a neurologist or chronic pain specialist. From there, your physician can help put together a treatment plan to ease your pain.

I have Sjogren’s syndrome and for a period of 7+ years, chronic pain was a regular part of my life. My rheumatologist prescribed me all kinds of joint pain medications, from plaquenil (generic name: hydroxychloroquine) an anti-malarial drug, to prescription-strength nonsteroidal anti-inflammatory drugs (NSAIDs), steroid medications, and even chemotherapies! It wasn’t until my pain was identified as nerve pain, not joint pain, that I was able to switch to a medication that worked to reduce my peripheral neuropathy.

In addition, I worked with a neurologist to determine that I had a co-morbid condition, called benign fasciculation syndrome, which was also contributing to my pain. This is important, because many chronic pain sufferers have co-morbidities, like fibromyalgia, which can increase your pain levels or even be the real driving force behind it.

Lifestyle Considerations

Beyond medications, your lifestyle is also an important component of reducing your neuropathic pain. Vitamin deficiencies, for example, have been identified as a cause of peripheral neuropathies. This is because certain B vitamins, including vitamins B1, B6 and B12, as well as vitamin E and niacin, are crucial for maintaining nerve health. Since alcoholism can result in serve vitamin deficiencies, avoiding substance abuse is also key.

Exposure to certain toxins or poisonous substances, such as lead and mercury, can also impact your nerves and cause resulting pain. Finally, trauma and pressure on the nerves can cause neuropathies as well, so alleviating pressure on your nerves, such as decreasing repeated motions on the parts of your body experiencing pain, is important.

Do you have an autoimmune condition(s) and suffer from peripheral neuropathy? What do you do to cope with your chronic pain? Let us know in the comments below!

Baby with Rare Autoimmune Disease Seeks Stem Cell Donor

Boston De Castro smiles while in care of the Children's Hosptial
Boston De Castro has a rare autoimmune blood disease called HLH, and he desperately needs a matching stem cell donor to save his life.

A three-month old baby boy named Boston De Castro from Winnipeg, Manitoba, Canada is seeking a stem cell donor.

Boston suffers from a rare autoimmune disease called hemophagocytic lymphohistiocytosis, known as HLH for short. According to Cincinnati Children’s Hospital, HLH is a life-threatening autoimmune condition in which the immune system’s T and NK cells become overactive, causing damaging inflammation to the body’s tissues and internal organs. The condition is especially damaging to the liver, brain and bone marrow, where blood is made.

Symptoms of HLH include persistent fevers, rash, enlarged liver and spleen, anemia, low platelets and white blood cells, jaundice, hepatitis, liver failure, respiratory issues, seizures, and altered mental functions. Patients need to undergo blood transfusions, stem cell therapy and a bone marrow transplant, in addition to taking various medications to calm the immune system, including steroids and chemotherapy.

Boston first started experiencing symptoms only a few weeks ago, when he developed a fever, and then his liver and spleen became enlarged. Shortly after, his blood counts started dropping rapidly. This is when he received a bone marrow biopsy, and was diagnosed with HLH. The three-month-old is currently undergoing his first round of chemotherapy while his parents desperately seek a stem cell donor that can save his life. The added challenge, however, is finding a matching stem cell donor that is of mixed ethnicity like him – half-Caucasian and half-Filipino.

His mother, Simone Janetta, spoke to the Canadian Broadcasting Corporation (CBC), saying, “We are just begging the community. Anybody who is half-Filipino [and] half-Caucasian, even if you’re any other ethnic minority, just get on the stem cell registry. You could safe a life, just like our son’s.”

Simone Janetta with her son Boston De Castro
Boston’s mother, Simon Janettta, holds her son while her undergoes chemotherapy. Their family is living in hospital to ensure Boston receives round-the-clock medical care.

Her plea was heard not only by the CBC, but by the Prime Minister of Canada himself, Justin Trudeau, who took to social media to share Boston’s story. “Can you save Boston’s life? There are two ways you can help: If you’re half-Caucasian and half-Filipino, please reach out to Canadian Blood Services and see how you can become a stem cell donor. If you aren’t you can still share this story and spread the word.” The post has received over 23,000 likes and 11,000 shares on Facebook already.

Donors must be between 17-35 years of age, with a preference for males, to reduce post-transplant complications. According to the Canadian Blood Services, only 3.5% of stem cell donors in the database are of mixed ethnic background. Because HLH is believed to be genetic, the donor must be unrelated to Boston as well.

Boston’s father, Rex De Castro, added, “I’m kindly begging anyone with a mixed-race ethnicity to donate their stem cells to help my son survive. The chemotherapy and the steroids [are] a temporary fix, and he needs the stem cell transplant really bad.”

Rex De Castro holds his two children
Rex De Castro, Boston’s dad, cuddles his 2-year-old daughter, Beatrix and newborn son, Boston. Both Beatrix and Boston suffer from rare health conditions.

A GoFundMe page has been setup for Boston, which has garnered over $25,000 in donations thus far. The donated funds will be used to relieve some of the monetary stress associated with the De Castro family having to live in hospital, and also, towards the bone marrow match. Many people have posted encouraging words on Boston’s GoFundMe page, urging him and his family to stay strong.

To learn more about HLH, check out this YouTube video by the Cincinnati Children’s Hospital. To read more about Boston De Castro’s story, check out his story on the CBC news website. And, if you know anyone who could potentially be a stem cell match for Boston or other mixed ethnicity patients, please consider sharing this story with them; you could save a life.

Christopher Cross Nearly Dies from COVID-19, Temporarily Paralyzed by Autoimmune Disease

Famed singer-songwriter Christopher Cross recently detailed his excruciating battle with COVID-19 in an exclusive interview with CBS.

In the interview, the 69-year-old Grammy winner described his ordeal as ‘the worst 10 days of [his] life,’ saying that he had a number of ‘come to Jesus moments’ where he was left begging for his life from a higher power.

Cross states that in early March, when the pandemic had just struck North America, he and his girlfriend Joy were touring in Mexico City for a concert. Upon their return to the United States, they fell ill and ended up testing positive for COVID-19.

“Nobody knew about masks, or anything like that,” Cross said. “No one wore masks on the plane, no one was doing that. We weren’t made aware that it was a problem.” In total, he and his girlfriend were sick for about three weeks’ time. While Joy continued to get better, Cross got continuously sicker, landing him in the intensive care unit at the hospital for 10 days.

In April, Cross says he finally began to feel better, and ended up going to the supermarket. However, when he returned home, his legs completely gave out. That’s when he was diagnosed with Guillain-Barre Syndrome (GBS), a neurological autoimmune disease which causes the body to attack its own nerves. His doctors believe that he developed Guillain-Barre Syndrome as a direct result of COVID-19.

Describing his COVID-19 and Guillain-Barre diagnosis, Cross says tearfully, “I couldn’t walk, I could barely move. And so, it was certainly the darkest of times for me…It really was touch-and-go, and tough.” He became paralyzed from the waist down, and his hands were paralytic as well; being a professional musician, he was concerned he would never be able to play the guitar again.

Guillain-Barre is one of many devastating effects that have been reported by COVID-19 survivors. Early in the pandemic, disturbing reports came out about multisystem inflammatory syndrome, an autoimmune complication in children who had been affected by the virus. It is thought to be similar to Kawasaki disease, an inflammatory condition affecting the heart’s coronary arteries.

Though Cross himself was only temporarily paralyzed by Guillain-Barre, he reports that he is still feeling the impact of this neurological autoimmune disease now. Initially, he used a wheelchair, and though he no longer needs it, he now relies on a cane as his mobility aid. He also suffers from nerve pain, brain fog, memory loss and issues with his speech.

Christopher Cross undergoes physical therapy to heal from the affects of Guillain-Barre and COVID-19.

Last month, Cross shared further details on his Instagram page about his grueling recovery, and paid tribute to the medical staff that helped him during that harrowing time, saying, “I’m grateful for my care team, especially my physical therapist, who has helped me to build strength and walk again.” He continued, “I realize that I am lucky to have survived COVID-19 and be on the mend from GBS. Most of all, I am blessed to have the love and support of many people.”

Though he’s recovered from the coronavirus, and has a 90% to 100% prognosis of making a full recovery from Guillain-Barre, Cross explained that he still wants to share his story to help others. “I felt it was sort of my obligation to share with people: ‘Look, this is a big deal…you’ve got to wear your mask. You’ve got to take care of each other. Because this could happen to you.'”

As part of his healing, Cross is turning to his music, which has always been a source of solace for the singer-songwriter. And, he can’t wait to get back to touring…when it’s safe to do so, of course!

Queen Latifah Raises Awareness about Scleroderma

Queen Latifah with her mother, Rita Owens, who passed away in 2018 after a five-year battle with Scleroderma. Photo credit: Johnny Nunez.

Queen Latifah, an actress, producer and singer, has become an advocate for those living with scleroderma after losing her mother, Rita Owens, to the disease in 2018.

Scleroderma, or systemic sclerosis, is an autoimmune disease that translates from Greek to ‘hard skin’, since hardening of the skin is one of the most visible manifestations of the disease, according to the Scleroderma Foundation. Symptoms of scleroderma can vary widely from person to person, and its effects can range from mild to life threatening. One of the most life threatening effects of scleroderma is that it can cause tissues on major organs to harden. In approximately 25% of patients, scleroderma results in interstitial lung disease, which causes scarring of the lungs and makes it difficult to breathe, which may also be fatal for the patient.

Unfortunately, this is what happened to Rita Owens. A lifelong educator, she passed out when teaching in her classroom. Though she had experienced shortness of breath and dry cough for a while, her family had thought it was just a result of her getting older. It wasn’t until she fainted in front of her students that various tests were done and specialists consulted, when she was finally diagnosed with systemic sclerosis-associated interstitial lung disease (SSc-ILD).

Before her passing, Rita Owens was one of approximately 300,000 Americans who suffer from Scleroderma.

In an interview with Good Housekeeping, Latifah said that the diagnosis came as a total shock to her family, saying, “That was terrifying because now we had to figure out, ‘what does it mean to have this autoimmune disease?’ I had never heard of scleroderma before.”

According to the Scleroderma Foundation, scleroderma affects an estimated 300,000 Americans. It’s onset is most frequent between the ages of 25 and 55, and women are four times more likely to have the disease than men. Localized scleroderma is more common in children, whereas adults are more likely to suffer from the systemic version of the disease that is more widespread in the body. Though the exact cause of the disease is unknown, it’s believed that genetic factors can make one more susceptible to the disease, and that it involves an overproduction of collagen.

Since little is known about the disease, Latifah is partnering with Boehringer Ingelheim Pharmaceuticals to raise awareness as part of the More Than Scleroderma campaign. “The right information and resources are out there and you can start by visiting SclerodermaILD.com. My hope is that I can help make others’ journey with SSc-ILD a little less challenging.”

Though Latifah was devastated to lose her mother after a five-year battle with the disease, she hopes to make a difference in her memory. “I found that knowledge is power when it came to managing my mom’s health, and I want to share what I’ve learned to help others. Anything my mon could do to help someone else have an easier journey, she wanted to be a part of – so it’s important for me to carry on my mom’s mission,” she explained.

To learn more about Scleroderma, visit the Scleroderma Foundation website.

Pro Tennis Player Caroline Wozniacki Describes Battle with Rheumatoid Arthritis

Caroline Wozniacki, a professional Danish tennis player, found herself embroiled in a match against her own immune system

From Grand Slam Champion to Bedridden

Caroline Wozniacki, a professional tennis player and Grand Slam champion from Denmark, was at the top of her game in 2018. At 27 years old, she had just finished playing in the Wimbledon, when she found herself feeling extremely ill.

“After Wimbledon, I just feel like I had the flu and wasn’t feeling well. I took some time off from tennis and training in the gym and was just going to relax, but I wasn’t feeling better. So I decided to go back to training and to see what happens,” the now 30-year-old tells Health in an exclusive interview.

She continued to play in tournaments across North America, but only continued to feel worse, and ended up having to withdraw from the Washington Open in Washington, DC as a result. “Day to day, I felt exhausted and was dizzy on the court,” Wozniacki explained. “I also had pain in some joints.”

Unbeknownst to fans, Carolina Wozniacki was battling an undiagnosed autoimmune disease through the later part of her tennis career

At the next tournament—the Rogers Cup in Montreal—Wozniacki was devastated to lose her first-round match. She put the loss behind her, though, and decided to focus her energy on preparing for her next match in Cincinnati. The following morning, however, Wozniacki couldn’t even move her arms or hands.

“I was in so much pain and felt exhausted. I went to see a doctor, because I felt extreme pain in my shoulders, elbows and hands,” she recalls. Her joints were swollen, but since her doctor didn’t see any damage to her ligaments, she chalked her pain up to her demanding travel schedule and athletic regimen. Strangely enough, her vocal cords were also inflamed and her voice became raspy.

Her symptoms continued to worsen, and because doctors couldn’t determine the cause, “They said, ‘Maybe you’re in bad shape. Maybe it’s mental. Maybe you’re pregnant.’ They basically called me crazy,” Wozniacki said. She found it extremely frustrating, especially considering she was in tip-top shape and had just won the Australian Open and a Grand Slam title the year prior. “I was 27 years old and the number two tennis player in the world. I’m in great shape and eat well. I do all the right things,” she lamented.

She insisted on getting multiple blood tests and consulting with various specialists. Finally, it was when she visited the fifth doctor in New York City, that it was discovered through a blood test that she had an autoimmune disease. However, it wasn’t clear which autoimmune condition she had. After a series of additional tests, she was finally diagnosed with rheumatoid arthritis (RA), a chronic inflammatory autoimmune disease affecting one’s joints.

Life After an Autoimmune Diagnosis

After being diagnosed with RA, Wozniacki is determined to live a full life

Wozniacki says that to her knowledge, she has no family history of RA or any other autoimmune disease. From what she understands, the condition could have been triggered due to her exhaustion and her immune system being compromised. Now, she keeps her RA symptoms under control through conventional pharmaceutical treatments, combined with lifestyle tips like consuming a healthy, anti-inflammatory diet and maintaining a consistent exercise routine. She also believes in getting enough quality sleep and avoiding stress in order to prevent arthritis flares.

Though the diagnosis was shocking, Wozniacki was determined to continue playing tennis, and even went on to play in the US Open and the China Open, where she won one of her biggest tournaments. She has since retired from playing tennis professionally, and now works to encourage other women living with chronic inflammatory diseases to share their stories through the Advantage Hers campaign.

Wozniacki describes her struggle with rheumatoid arthritis (RA) as part of the Advantage Hers campaign.

“It takes a long time for a lot of women to get diagnosed, and a lot of doctors don’t take their symptoms seriously at first because autoimmune diseases aren’t on a lot of doctors’ radars. I want women to know that if they have pain in the joints and feel exhausted, they should talk to their doctors about getting tested for RA or other autoimmune diseases,” she says.

Finally, Wozniacki credits her family for helping her to get through the difficulties of living with a chronic invisible illness. That being said, she also believes it’s important to connect with others living with the disease; “I really think it’s important to be able to speak to other people going through the same thing you are. It really makes a difference,” she said.

To learn more about Carolina Wozniacki’s journey with RA, check out the Advantage Hers campaign and share your own story on social media with the hashtag #AdvantageHers.

Professional Soccer Player Describes Life with Autoimmune Diseases

Shannon Boxx, a professional women’s soccer player, secretly battled two autoimmune diseases while winning medals across the globe

Playing Professionally with Invisible Illnesses

In 2012, Shannon Boxx, a professional soccer player on the US national women’s team, was at the top of her career. She had earned medals at three World Cup games and two Olympic gold medals. However, unbeknownst to her teammates and coaches, she had actually been diagnosed with a debilitating autoimmune disease a decade prior, and another autoimmune disease just four years ago.

Boxx, now 42, was first diagnosed with Sjogren’s Syndrome in 2002, which causes widespread dryness, joint pain and fatigue, among other symptoms. She was later diagnosed in 2008 with systemic lupus erythematosus (SLE), or simply, lupus, which also causes a myriad of symptoms, including joint pain, muscle pain, fatigue, skin rashes, brain fog and major organ involvement.

Treatment for Lupus and Sjogren’s Symptoms

When interviewed by the publication The Undefeated, Boxx said that she manages her lupus flares by wearing compression pants, which help with the joint pain that she experiences in her knees. She also takes hydroxychloroquine, also known as Plaquenil, an anti-malarial drug that helps her to manage the joint pain associated with both of her autoimmune conditions. Boxx describes her joint pain as severe; “There were times, even when I was playing on the national team, I was having teammates cut my steak for me because it hurt so much on my wrist to actually hold onto a fork or a knife.”

Fatigue and brain fog are other symptoms that Boxx battles daily. “I used to be able to run forever, and now I can barely walk sometimes for a mile or two. And that’s pretty heartbreaking,” she confessed. Boxx has children, and she wants to be able to run around with her kids for as long as possible. “To know that there’s days that I can’t do it, it puts you in a really bad place, mentally,” she said. When asked about how the fatigue feels, she commented, “It is this feeling of a weight just sitting on you and just even to lift your head off the pillow takes so much effort and your eyes don’t want to open. When I was playing it felt like my feet were in quicksand.”

Autoimmune Disease Triggers

Boxx explained that one of the main triggers for her autoimmune flares is stress. Now that the coronavirus is grappling the world, the global pandemic has added another layer of anxiety to the mix, especially given that she is immunocompromised. As a result, the professional athlete is following local shelter-in-place orders, wearing masks diligently and ensuring to frequently wash her hands and stay six feet apart from others.

Another source of anxiety is the fact that hydroxychloroquine, the medication that she takes, has become more scarce as a result of it being explored for its potential use in treating COVID-19. “It makes me sad that there are a lot of people that are suffering or even worse because they now can’t get the medication that they need,” she said.

Boxx believes another potential source of her flares is over-exposure to the sun, though thankfully, most days are overcast in her home of Portland, Oregon in the Pacific Northwest. She also frequently experiences the so-called ‘butterfly rash‘ that is a hallmark of lupus, and can arise following exposure to sunlight.

Two other factors that must be considered in the pathogenesis of autoimmune disease are sex and race. According to the Sjogren’s Foundation, nine out of 10 Sjogren’s patients are women; similarly, the US National Library of Medicine states that nine out of 10 lupus patients are women. Lupus is also three times more likely to occur in African American women than white women. Boxx, for her part, is a biracial woman, so her gender and ethnic background may have played a part in developing autoimmune diseases.

Moving Forward with Chronic Illness

Shannon Boxx plays in a friendly soccer match against Brazil’s women’s team.

Though living with two different autoimmune conditions is undeniably challenging, Shannon Boxx is determined to live her best life. She retired from playing professional soccer in 2015, and is focusing on taking care of her own health, and spending time with her husband and kids. Though she has retired from professional soccer, she enjoys playing non-competitive games with other international teams and coaching kids’ soccer teams.

Boxx is also an advocate for those living with chronic illnesses, and actively participates in awareness campaigns for the Lupus Foundation of America. Commenting on her conditions, she said, “I’ve been able to deal with it, and still do something that I love…[lupus] has shown me that I can’t take [soccer] for granted, because that’s something that I love to do. If anything it’s given me perspective.”

10-Year-Old Battling Autoimmune Disease Becomes Special Deputy

Caleb Anderson, Special Deputy for Boone County, is battling an autoimmune disease

Caleb Anderson, a 10-year-old boy from the Indianapolis, Indiana area, has become the newest member of the Boone County Sheriff’s Office.

Caleb, who is battling an autoimmune disease, wants to be a K-9 handler when he grows up. As such, the Boone County Sheriff’s Office wanted to surprise Caleb by swearing him in and deputizing him as a Special Deputy. At the swearing in ceremony, Caleb got to meet K-9 Deputies Clint Stewart and Taylor Nielsen, along with their trusted K-9 partners, Makya and Arco. Nelson Uniforms also donated a full uniform and tactical boots for Caleb to wear.

Caleb Anderson meets K-9 handlers and their K-9 partners at the Boone County Sheriff’s Office

Sheriff Nielsen commented, “Caleb’s theme is ‘Fight Courageously’, we can all learn from this.” He continued, “We have learned from Caleb that when we are faced with difficulties in life that we fight with everything we have. Keep fighting Deputy Caleb, we will always be in your corner.”

Sue Anderson, Caleb’s mother, said that Caleb currently attends Connections Academy, an online school. She explained, “Since Caleb is immune suppressed he can’t go into a classroom setting due to the risk of infection for him.”

Anderson explained that she was connected with the Sheriff’s Department when Caleb had the opportunity to meet up with Deputy Nielsen to do K9 training, and from there, was introduced to all of the amazing people at the Boone County Sheriff’s Office. “Caleb dreams about being a K9 handler one day and is a little shadow to the Sheriff and Deputy Nielsen,” she said.

The Autoimmune Warrior team is so happy to see that Caleb is realizing his dreams of becoming a K9 handler! Battling an autoimmune disease is never easy, and especially challenging as a child. Thank you, Caleb, for being an inspiration to us all.

To watch Caleb’s swearing in ceremony, check out the video on Boone County Sheriff’s Office Facebook page.

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Autoimmune Patient Becomes First Double-Lung Transplant Recipient after Surviving COVID-19

Mayra Ramirez is the first known patient in the US to receive a double lung transplant after surviving COVID-19

Mayra Ramirez, a 28-year-old paralegal, had always been relatively healthy, enjoying going for runs around her Chicago neighborhood. She had neuromyelitis optica (NMO), an autoimmune disease that affects the spinal cord and nerves of the eyes. Other than this diagnosis, however, she was in good health and took extra precautions when COVID-19 hit Illinois.

Mayra Ramirez, a 28-year-old paralegal and autoimmune patient, contracted COVID-19 despite taking precautions

In March, she began working from home and rarely left home. But in April, Ramirez says she began to experience symptoms of fatigue, chronic spasms, diarrhea, and loss of taste and smell, in addition to a slight fever. So she contacted her doctor, who recommended that she monitor her symptoms from home, and keep in touch with a COVID-19 hotline.

Unfortunately, in late April, Ramirez started to feel “really bad” and ended up going to the ER at Northwestern Memorial Hospital where she was put on a ventilator. From that moment on, she says “everything was a blur”.

Ramirez spent the next six weeks in the COVID ICU, on both a ventilator and ECMO, a technique of providing prolonged cardiac and respiratory support to patients whose heart and lungs cannot support themselves. By early June, her lungs showed irreversible damage and the hospital’s medical team said that it was clear that only a double-lung transplant could save her.

Mayra Ramirez’s lungs suffered irreversible damage from COVID-19 (pictured here is one of her lungs)

“Once Mayra’s body cleared the virus, it became obvious that the lung damage wasn’t going to heal, and we needed to list her for a lung transplant,” said Beth Malsin, MD, a Pulmonary and Critical Care Specialist with the hospital.

So on June 5th, Ramirez underwent the life-saving double lunch transplant procedure, making her the first known patient in the US to receive such a transplant after surviving COVID-19. She was discharged from the hospital on July 8th, but has continued to receive occupational and physical therapy after the procedure.

Mayra Ramirez received a double-lung transplant after experiencing severe lung damage due to COVID-19

Ankit Bharat, MD, Surgical Director of the Northwestern Medicine Lung Transplant Program, stated “When we opened Mayra’s chest cavity, large parts of her lungs were necrotic and filled with infection. The severe damage and inflammation to the lungs had caused pressure overload on the heart which further made the surgery quite complex…Nevertheless, the success of [the transplant] emphasizes that surgical innovation can also play an important role in helping some critically ill COVID-19 patients.”

Mayra Ramirez stands alongside Dr. Bharat and Dr. Tomic, two of the medical professionals from Northwestern Medicine who aided her in the fight against COVID-19

When asked about her experience with COVID-19, and what she would want others to know about the disease, Ramirez says, “People need to understand that COVID-19 is real. What happened to me can happen to you. So please, wear a mask and wash your hands. If not for you, then do it for others.”

To learn more about Mayra’s story and her experience as an autoimmune patient with coronavirus, please visit the Northwestern Medicine website.

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Dutch Skating Champion Lara van Rujiven Dies from Autoimmune Disease

Speed skating champion Lara van Rujiven passed away from complications due to an autoimmune disease on Friday night, the Dutch Speed Skating Association KNSB has reported.

The 27-year-old gold medalist athlete was admitted to a hospital in Perpignan, France on June 25 with symptoms indicating that her immune system was compromised. She began to experience internal bleeding, including in her brain, and underwent two operations while being kept in an artificial coma.

Sadly, van Rujiven eventually succumbed to complications of her autoimmune disease. While the exact nature of her autoimmune condition is unknown, some have speculated that she suffered from autoimmune encephalitis, vasculitis, idiopathic thrombocytopenic purpura (ITP), lupus, or one of the many other autoimmune conditions which can cause internal bleeding.

Image

Van Rujiven won the gold medal for the 500-metre short track skating championship in 2019 in Bulgaria, becoming the first woman from the Netherlands to do so.

Fans and fellow athletes alike took to social media to express their sadness about her passing. “What terrible news we’ve just received. The loss will be felt in the sports world,” Dutch national coach Jeroen Otter said.

On behalf of Autoimmune Warrior, I’d like to send our condolences to Lara’s family. Her story demonstrates that autoimmune disease really has no bounds, and can affect even the strongest among us in the prime of their life. Rest in peace, Lara – you’ve made the Netherlands proud!

10 Facts about Crohn’s Disease

According to the Crohn’s & Colitis Foundation, Crohn’s is a chronic inflammatory condition of the gastrointestinal tract. Read on to learn 10 interesting facts about this autoimmune condition.

1. It’s more common than you think

An estimated 3 million Americans suffer from autoimmune diseases of the digestive tract, referred to as Inflammatory Bowel Disease (IBD). These conditions include Crohn’s disease, Celiac disease and Ulcerative Colitis. Women and men are equally likely to be affected by Crohn’s disease, unlike many other autoimmune conditions which are more prevalent among females.

2. Crohn’s affects patients early in life

Unlike some autoimmune diseases, such as Sjogren’s Syndrome, which are more likely to develop during middle-age, Crohn’s tends to develop early in a patient’s life. Most commonly, the disease will occur in one’s teens or twenties, though some patients can experience symptoms even earlier. According to WebMD, while most people are diagnosed before age 30, the disease can still occur in people in their 60s and beyond.

3. The gastrointestinal symptoms can be debilitating

The most common symptoms of Crohn’s are gastrointestinal in nature. These symptoms include abdominal cramps, diarrhea, weight loss, anemia and delayed growth (especially in younger children). There are actually different types of Crohn’s disease depending on which part of the gastrointestinal tract is affected, and each subtype has its own specific symptoms.

4. Non-Gastrointestinal symptoms are also problematic

Crohn’s patients sometimes experience symptoms that aren’t gastrointestinal in nature, and which are often more problematic than their bowel issues. These symptoms include: fever, colitic arthritis (which migrates along the body and affects one’s knees, ankles, hips, wrists and elbows), pericholangitis (an inflammation of the tissues around the bile ducts), kidney stones, urinary tract complications, and fistulas (abnormal connections between body parts, such as organs and blood vessels).

5. It can greatly impact one’s quality of life

According to the Crohn’s & Colitis Foundation, autoimmune conditions of the digestive tract can highly impact one’s quality of life. For example, the Foundation shared the story of Paige, who was diagnosed with Crohn’s at age 20. Paige had lost 40 lbs on her already petite frame as a result of the disease, and she even had difficulty standing up, since her muscles had become accustomed to her being doubled over in pain. Thankfully, by participating in clinical trials, Paige’s condition is now improving, and she’s regaining her quality of life.

6. The condition can impact one’s mental health too

The Crohn’s & Colitis Foundation states that rates of depression are higher among patients with Crohn’s disease and ulcerative colitis as compared to other diseases and the general population. Furthermore, anxiety is also common among patients who have IBD. Dr. Megan Riehl, a clinical psychologist with the University of Michigan’s Department of Gastroenterology, explains that stress and anxiety can contribute to ‘flares’ of the disease. She also says it’s imperative for patients to find ways to cope with living with a chronic illness, such as cognitive behavioral therapy.

7. A comprehensive physical exam is necessary for a Crohn’s diagnosis

A number of advanced diagnostic tools are used to determine if a patient has Crohn’s disease. These diagnostic procedures include: imaging scans and endoscopic procedures. Imaging scans involve CT scans or specialized X-rays to view your colon and ileum (a portion of the small intestine). Endoscopic procedures, such as a flexible sigmoidoscopy or a colonoscopy, involve the insertion of a tube into one’s rectum, lower colon or entire colon to examine the area in detail.

8. Crohn’s may be genetic in nature

According to John Hopkins Medicine, Crohn’s may be genetic, especially considering it’s more prevalent among people of certain ethnic groups. For example, people of Ashkenazi Jewish descent are at a greater risk of having the disease compared to the general population. In addition, a genetic cause is suspected, since studies have shown that between 1.5% and 28% of people with IBD have a first-degree relative, such as a parent, child or sibling who also has the disease.

9. Environmental triggers for Crohn’s may also be responsible

According to the Crohn’s & Colitis Foundation, the lack of complete gene penetrance and the rapid rise of IBD incidence in certain geographic regions suggests that both genetic and environmental factors contribute to this condition. Several environmental triggers currently being studied include: diet, smoking, viruses and psychological stress.

10. There is hope

If you or someone you know has Crohn’s disease, it is important to get support for your condition. In addition to working closely alongside a team of medical professionals to get the right treatment, patients are encouraged to find a local support group where they can connect with others who are living with the condition. Moreover, patients should consider taking advantage of the many patient resources out there, such as the Crohn’s and Colitis online community, the IBDVisible blog and the patient stories center. Remember, you’re not alone in the fight against Crohn’s!

Thank you for stopping by Autoimmune Warrior. If you found this article to be informative, please like, share, and comment below!

What is Medical Gaslighting?

“Maybe it’s just all in my head?”

That was the question Isabella Rosario asked herself after unsuccessfully trying to get a diagnosis for her numerous debilitating symptoms for over a year-long period. These concerning symptoms included migraines, joint dislocations, chest pain, lightheadedness, pneumonia and more. When she first saw a doctor at her university clinic, and later, her GP, she was told what she was experiencing was due to stress related to her studies, and completely psychological in nature. Eventually, after seeing numerous specialists, she was diagnosed with two chronic health conditions – hypermobility spectrum disorder (HPD) and postural orthostatic tachycardia syndrome (POTS). 

Isabella was fortunate to eventually get a diagnosis, but other chronic illness sufferers are not so lucky. Many medical professionals routinely dismiss their patients’ ailments and concerns – a phenomenon known as medical gaslighting. Eventually, patients who have been gaslit will begin to question their own sanity and wonder if their health problems are actually ‘real’ or just a figment of their own imagination.

According to the blog A Journey Through the Fog, medical gaslighting can take many forms, including:

  • Minimizing debilitating or dangerous symptoms. – “Your pain can’t be that bad
  • Blaming symptoms on mental illness. – “It’s all in your head” 
  • Assuming a diagnosis based on sex, race, identity, age, gender, ethnicity or weight. – “If you lost weight, your symptoms would disappear
  • Refusing to order important tests or imaging work. – “I know you don’t have [condition], I do not need an MRI to tell me this. I know how to do my job
  • Refusing to discuss the health issues with the patient. Berating patients for trying to self-diagnose. – “Who’s the doctor here, me or Google?” 

Throughout the course of my journey to being diagnosed with various autoimmune diseases and chronic illnesses, including Sjogren’s Syndrome, Hidradenitis Suppurativa and Benign Fasciculation Syndrome, my symptoms were either minimized or completely discounted by medical professionals. As I detail in the blog post, When Your Doctor Doesn’t Believe You, when I first brought up joint pain in my hands to my GP at age 19, he accused me of ‘texting too much’ when in reality, I had undiagnosed Sjogren’s Syndrome that was quickly developing into Rheumatoid Arthritis (RA).

In another instance, I needed a referral to see a Rheumatologist. When the nurse checked me in and asked about the reason for the visit, she said, ‘How does someone your age need to see a Rheumatologist? Did you wear high heels too much in high school?’ This kind of comment is not only rude and uncalled for, but patronizing and dismissive as well. People of all ages can experience a myriad of health issues, and should be taken seriously.

Last year, a video posted by a nurse on the popular social media platform TikTok drew outrage among the chronic illness community. The video featured a nurse imitating a patient struggling to breathe, while the nurse refused to help. She then captioned the video with the words: “We know when y’all are faking’. The video prompted many chronic illness patients to respond recounting their own stories of medical gaslighting, using the hashtag #PatientsAreNotFaking.

According to healthline.com, women are more likely to have their pain described as ’emotional’ or psychological in nature. Meanwhile, patients of color are less likely to be thoroughly examined as compared to their white counterparts. This systemic sexism and racism in the healthcare industry was also pointed out by many using the same hashtag:

In order for patients to get the healthcare they need (and deserve), medical professionals need to take their patients seriously; and that includes listening to their experiences, being compassionate, and issuing the necessary examinations and other tests needed to get an accurate diagnosis. My hope is that if you’ve ever experienced medical gaslighting, that you remain assertive and find a healthcare team that will take the necessary action to diagnose and treat your illness.

Have you experienced medical gaslighting before? If so, comment below to share your experience.

Video: Living with Autoimmune Diseases

Below is a video from the YouTube channel Our Grandfather Story (OGS), which raises awareness about overlooked stories across Southeast Asia. In this video, OGS interviews people with autoimmune diseases to ask them questions like, “Are you really sick?” “Can you be cured?” and “Should I pity you?” I found the video to be very relatable, especially as someone with an invisible illness, and I liked how they talked about some of the mental health impacts of chronic illness as well.

The participants in the video live with the following conditions: myasthenia gravis (MG), primary sclerosing cholangitis, autoimmune hepatitis, ulcerative colitis, autoimmune encephalitis, and lupus nephritis.

Thank you to OGS for raising awareness about autoimmune diseases; I hope my readers enjoy the video as much as I did!

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American Family to Immigrate to Canada After Type 1 Diabetes Diagnosis

The Reseburgs have applied to immigrate to Canada as a result of their daughter’s medical diagnosis. Photo courtesy of the Canadian Broadcasting Corporation (CBC).

Amanda Reseburg and her husband of Janesville, Wisconsin, have applied to immigrate to Nova Scotia, a province in Atlantic Canada. While Reseburg has always admired the region’s coastal views, the beautiful scenery is not the reason for her family’s desire to move.

Reseburg’s nine-year-old daughter, Molly, was diagnosed with Type 1 diabetes, an autoimmune condition in which the body’s own immune system destroys insulin-producing cells, called islets, in the pancreas. Consequently, the body produces little to no insulin, an important hormone that enables glucose to enter cells and produce energy. Symptoms of the condition can include fatigue and weakness, blurred vision, unintended weight loss, extreme hunger, increased thirst and frequent urination, among other complications.

The family is hoping that by moving to the Canadian province, they will receive better insurance coverage and more affordable insulin. Reseburg says her daughter takes six to 10 needles a day of long-acting and short-acting insulin. She is also using a continuous glucose monitoring system, which monitors her blood sugar levels and must be replaced every 10 days.

Reseburg says they have been fortunate thus far- their family has medical coverage through her husband’s employment. However, given the current state of the economy and how closely medical insurance is tied to employment in the United States, she wonders what would happen if he were to lose his job.

Nine-year-old Molly Reseburg was diagnosed with Type 1 diabetes, an autoimmune disease impacting her insulin levels. Photo courtesy of the Canadian Broadcasting Corporation (CBC).

Another consideration is that once their daughter becomes an adult, she may no longer be eligible to be on their insurance coverage. Reseburg said, “I don’t want to tell my kids, ‘Go find a good office job.’ I want them to be able to do what they want to do, and not have to worry about insurance.”

The affordability of insulin is another concern. While she has never had to go across the border to buy insulin, she understands why people do it. “I don’t see America getting on board [affordable insulin] any time soon, so that’s why we’re looking to move,” she explained.

Reseburg has also been frustrated with the lack of consumer choice with her daughter’s medication. Several months ago, her insurance company informed her that they would no longer be covering the insulin her daughter currently takes, and would be switching her to a new type of insulin instead. “We don’t get any say in that whatsoever. They decide what insulin they will allow us to have,” she lamented.

This is particularly concerning due to the fact that her daughter Molly also suffers from a chromosomal condition called Turner syndrome, which impacts the effectiveness of the insulin she takes. And, not only was the type of insulin changed, but the insurance company is covering $75 less, resulting in the family having to pay even more out of pocket for this necessary treatment.

The family has retained an immigration lawyer to help them with their Canadian immigration application. On top of attorney fees, the immigration fees cost several thousand dollars, plus extensive paperwork detailing how the family will be able to adapt to their new country and how they plan to contribute to the economy. The mountain of paperwork is worth it, however, since the family says that if their application is successful, their daughter’s insulin will be covered and she’ll no longer be at the mercy of their insurance company.

While it usually takes about two years to immigrate to Canada, the COVID-19 situation could draw out the process even longer. Nevertheless, the family is hopeful that their plan will pan out. “We’ll get their eventually,” Reseburg said.

Thanks for stopping by Autoimmune Warrior! If you enjoyed this story, please consider commenting below and sharing this article with your friends and family.

What is Spoon Theory?

The term ‘spoon theory’ was coined by Long Island, New York based blogger Christine Miserandino, a chronic illness advocate living with systemic lupus erythmatosus (SLE). The theory states that those with chronic illness only have so many ‘spoons’, or units of energy, available to them in order to accomplish their daily tasks. This is in contrast to healthy, able-bodied individuals, who have a much greater supply of ‘spoons’ that allow them to achieve all that they need to get done throughout the day.

Christine first created the term after she tried explaining to a friend what it was like to live with the autoimmune disease lupus. After having some difficulty explaining how she lived with chronic pain, chronic fatigue, and challenging symptoms, she realized that it would be easier to explain her disease if she had a visual aid. This is when she handed her friend 12 spoons to represent units of energy, and took each spoon away as her friend described every activity that she had to do throughout the day, including routine items like doing the groceries, cooking a meal, showering, and even getting out of bed. Her friend quickly realized that she didn’t have enough spoons to complete all the necessary tasks in her daily life, and had to make difficult choices, like whether to eat dinner or run an errand instead.

Christine later decided to write a post on her blog But You Don’t Look Sick, to describe her interaction with her friend and the creation of the ‘spoon theory’. This also lead to the development of the term ‘spoonie’, to describe someone with a chronic illness who has to make difficult choices throughout their daily lives on what they will and won’t be able to do.

I think that spoon theory is an excellent way to describe what it’s like to live with an autoimmune disease to any healthy, able-bodied person who may not otherwise understand what you’re going through. This is especially true if you have an invisible illness (when you don’t have any obvious outward symptoms), and others perceive you as lazy, inconsistent, or having poor time management skills.

One of the most difficult aspects of having limited ‘spoons’ is that some friends or family members may not understand why you can’t do certain things, like go out for a fun night on the town on a Friday after work, or why you can’t run a 5k with them, or be a bridesmaid at their week-long destination wedding. These are tough decisions that any spoonie or autoimmune warrior has to make, but, they’re just part of the reality of living with a chronic illness.

On a more positive note, sometimes, have limited ‘spoons’ does force us to choose the things that really matter in life. Maybe you don’t want to go to your Great Aunt’s potluck, but if you were perfectly healthy, you would have begrudgingly gone, just to be nice. But when you live with chronic pain, fatigue and other symptoms, you don’t have the luxury of being a ‘yes-man’ (or woman). You have to decide what is worth your time and what isn’t.

This sentiment was echoed by Estrella Bibbey in the video, Sjogren’s Syndrome: A Place to Begin, when describing her life with Sjogren’s Syndrome. “This kind of illness makes you slow down, it makes you choose wisely, and it makes you want to conserve your energy for the very best things,” she said. “I don’t live my life just willy-nilly, [like] we’re going to do whatever and just pick up the pieces later. It’s a more controlled experience, but we choose the really good things and we make sure our energies are focused on the really good events. When we commit to going to a birthday party, or some other kind of social event, we commit to it and we are really excited to be there, and we made a space in our lives to be there.”

If you’re a spoonie (like me) and I had to give you one piece of advice, I would say to practice self-care, be kind to yourself, and make sure you’re using your limited spoons wisely.

What do you think of the term ‘spoon theory’? Does it accurately describe your life as an autoimmune warrior? Have you ever had to make a difficult decision about using your ‘spoons’? Comment below and let me know!

Is This Illness Related to COVID-19 Autoimmune?

Healthcare professionals are grappling with the effects of pediatric multisystem inflammatory syndrome (MICS), a complication of COVID-19 in children

Across the world, disturbing reports are coming through detailing a new complication thought to be related to COVID-19 that is affecting children with the virus. The illness, called pediatric multisystem inflammatory syndrome, or MICS for short, causes the immune system to overreact, leading to dangerously high levels of inflammation throughout the body. It impacts the body’s major organs, including the heart, liver, and kidneys, among other parts of the body.

Juliet Daly, a 12-year old girl from Louisiana, was diagnosed with both COVID-19 and MICS after going through cardiac arrest. Thankfully, she was airlifted to a children’s hospital, where she was put on a ventilator until she could breath on her own and her heart and other organs had recovered.

Juliet Daly was diagnosed with COVID-19 and pediatric multisystem inflammatory syndrome after being admitted to the hospital. Image courtesy of CNN.

Pediatric multisystem inflammatory sundrome has been compared to Kawasaki disease, an inflammatory condition primarily found in children under age five that impacts the heart’s coronary arteries. Kawsaki disease can lead to complications like artery enlargement, aneurysms, issues with the lymph nodes, skin, and the lining of the nose, throat and mouth. Some experts hypothesize that the coronavirus could be a trigger for Kawasaki disease. A recent study done in Bergamo, Italy found that the incidence of a ‘severe, Kawasaki-like disease’ increased 30-fold after the virus broke out in the region, further supporting this theory.

Pediatric multisystem inflammatory syndrome also bears the hallmarks of a cytokine storm, a phenomenon in which the body’s immune system overreacts to the virus and mounts a harmful inflammatory response in the body.

This raises the question, is MICS autoimmune in nature? While little is known about the condition, Dr. Randall Williams, Director of the Missouri Department of Health and Senior Services, said during a recent press conference that the condition is an “autoimmune reaction“, and that “it’s basically where your body reacts to an antigen and starts attacking itself.”

The relationship between viruses and autoimmune disease has been studied in the past. For example, studies have found a link between the Epstein-Barr virus (EBV) and the pathogenesis of a number of autoimmune diseases including lupus, multiple sclerosis, rheumatoid arthritis, juvenile idiopathic arthritis, inflammatory bowel disease, type 1 diabetes, and celiac disease.

Though there isn’t a cure for MICS, it’s treated by giving patients steroid and intravenous medications commonly issued to patients with an autoimmune disease, in an effort to decrease damaging inflammation.

While the coronavirus has proven to be less common and less deadly in children than adults, two young children and a teen with COVID-19 who showed Kawasaki disease symptoms have died in the state of New York. As a result, parents are advised to take precautions and contact their pediatrician or family medicine provider if your child has a fever to determine the best next steps.

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Autoimmune Disease on the Rise in the United States

An April 2020 study published in Arthritis and Rheumatology suggests that autoimmune disease is on the rise in the United States.

In the study, researchers found that the prevalence of the most common biomarkers of autoimmune disease, called antinuclear antibodies (ANAs), is significantly increasing in the U.S. overall as well as among certain populations. These affected populations include:

  • Men
  • Non-Hispanic whites
  • Adolescents
  • Adults 50 year and older

The researchers examined over 14,000 patients ages 12 and up over the course of three time periods spanning 30 years. In this time frame, they discovered that the overall frequency of ANAs in their test subjects went from 11% affected individuals to almost 16% affected. The worst affected population was the adolescent group, who experienced a nearly three-fold increase in ANA rates over the course of the study period.

While the exact cause of autoimmune disease remains unknown, many scientists believe that a combination of genetic and environmental factors is responsible. However, the researchers in the study state that because people have not changed much genetically over the past 30 years, it is more likely that lifestyle or environmental factors are responsible for the ANA increases.

Christine Parks, PhD, is one of the researchers involved in the study who focuses on the environmental causes of rheumatoid arthritis (RA) and other autoimmune diseases. “These new findings…will help us design studies to better understand why some people develop autoimmune diseases,” she said. She also added that there are over 100 chronic, debilitating autoimmune conditions that could stand to benefit from further research.

Donna Jackson Nakazawa, a Maryland-based science journalist and author of the book The Autoimmune Epidemic, believes that our ever-increasing exposure to chemicals, heavy metals, and viruses, coupled with stress, dietary and other lifestyle factors, is primarily to blame for the increase in autoimmune disease. She also points out that there may be a connection between autoimmune disease and allergies, which are also skyrocketing.

Nakazawa herself suffers from Guillain-Barre Syndrome, a paralyzing autoimmune disease similar to multiple sclerosis (MS). In her latest book, The Last Best Cure, she states that experts predict that the number of Americans who suffer from chronic conditions will rise an astonishing 37% by 2030.

While this may not sound like positive news, one good thing is that with an increase in autoimmune disease, more scientists, medical professionals and pharmaceutical companies will be encouraged to undertake research to find treatments and, ultimately, a cure for autoimmunity. I personally am hopeful that we will see enormous strides in biotechnology in my lifetime.

Are you surprised by the increase in autoimmune disease in the U.S.? Let us know in the comments below!

Why Autoimmune Patients with COVID-19 Should Beware of the Cytokine Storm

As the SARS-CoV-2 virus responsible for the COVID-19 disease continues to infect people and claim lives across the globe, scientists and medical professionals are learning more about its impact on patients.

One interesting phenomenon that’s been observed is that some coronavirus patients experience relatively mild to moderate symptoms, while others experience severe, life-threatening problems that can land them in the ER. According to Sharp Health News, the virus itself may not be entirely to blame for this, but rather, an overreaction by the body’s immune system.

When a foreign agent, such as a virus, invades your body, your immune cells secrete cytokines, which are molecules that initiate an immune response. However, in some cases, immune cells continue to secrete cytokines, even after a sufficient immune response has been mounted. This is called a ‘cytokine storm’ and the overproduction of these molecules can cause a harmful inflammatory response in the body.

Certain people are more susceptible to cytokine storms than others; for example, there is evidence that those with genetic mutations in their immune cells are more vulnerable. According to creakyjoints.org, those with autoimmune conditions often have abnormally high levels of these cytokines, which is why autoimmune patients often take immune-suppressing medications. However, a cytokine storm isn’t the same as an autoimmune disease flare, though they can be related.

As detailed by creakyjoints.org, some autoimmune patients end up with cytokine storms unrelated to COVID-19. Dr. Randy Cron, a pediatric rheumatologist and author of the book Cytokine Storm Syndrome commented, “About 10% of patients with juvenile idiopathic arthritis will experience [a cytokine storm]; in some cases, multiple times.”

With regards to COVID-19, which is respiratory in nature, a cytokine storm can gravely impact a patient. Acute lung injury (ALI) is a common consequence of a cytokine storm occurring in the lungs, and if a lung infection is severe, the inflammation will spread to the rest of the body via one’s blood circulation and cause sepsis. In some cases, the immune response to an infection can even be deadly.

That’s why it’s important to ‘calm the storm’ and prevent a cytokine storm before it even happens. One type of treatment being explored for COVID-19 is hydroxychloroquine, which is an antiviral and immunosuppressant drug used to treat malaria and autoimmune diseases like lupus, rheumatoid arthritis (RA) and Sjogren’s. Although the medication is still undergoing clinical trials, many are hopeful that this drug will serve as a treatment to halt the progression of COVID-19.

Besides pharmaceutical therapies, Sharp Health News cites curcumin, a compound found in turmeric, as beneficial for its anti-inflammatory properties. A 2015 study states that in lab experiments, researchers found that curcumin blocked the release of the cytokines that are responsible for inflammation.

All in all, it’s important for autoimmune patients to guard against the coronavirus by adhering to strict hygiene guidelines, such as hand washing thoroughly with soap and water, avoiding close contact with others, and disinfecting surfaces routinely. Remember, prevention is the best form of treatment, and can help those with autoimmune disease to avoid a damaging cytokine storm.

10 Facts About Hidradenitis Suppurativa

According to the Hidrandenitis Suppurativa (HS) Foundation, HS is a chronic, painful skin disease that causes boils to form in the folds of the skin and has a profound impact on quality of life. Read out to find out 10 facts about this chronic autoimmune condition.

1. Hidradenitis Suppurativa (HS) is a common disease

Although HS was once thought to be a rare disease, peer-reviewed medical journals have stated that HS affects approximately 1-4% of the world’s population, when taking into account all the stages of the disease. This means that there are millions of individuals living with this skin condition.

2. It affects certain areas of the skin

HS commonly occurs in the areas of the skin that rub together, such as the armpits (axillae), groin, buttocks, and underneath the breasts. These areas are rich in apocrine glands, which produce sweat, and have many hair follicles which can get obstructed. These obstructed follicles will then progress into pus-filled abscesses and boils. The boils can feel like hard lumps, or clusters of inflamed lesions and sinus tracts (called ‘tunnels’) which give off chronic seepage and can scar.

3. HS is classified into three stages

HS is classified into three stages called Hurley Staging. This classification method allows medical professionals to assign a severity level to HS. The three stages are:

  • Hurley stage I – a single lesion without a sinus tract (‘tunnel’) formation
  • Hurley stage II – multiple lesions or areas impacted, but with limited tunneling
  • Hurley stage III – multiple lesions involving an entire area of the body, with more extensive sinus tract formations and scarring.

Keep in mind that these stages don’t necessarily take into account disease activity, measure pain, or the impact on one’s quality of life.

4. There are several risk factors

The exact cause of HS is unknown. However, experts believe that the condition is connected to hormones, genetics, and autoimmune issues. HS is not caused by an infection or poor hygiene, and it isn’t contagious.

Though the exact cause isn’t known, there are a number of risk factors that can increase one’s likelihood of developing the disease, including:

  • Sex – Women are about three times more likely to develop HS than men.
  • Age – HS most commonly occurs in women between the ages of 18 and 29. It rarely occurs before puberty, though individuals who develop the condition at an early age may be at an increased risk of developing more widespread disease.
  • Family history – It’s believed that inherited genes may play a role.

5. Lifestyle factors also impact the disease

There are also lifestyle factors that can impact the disease, including:

  • Obesity – Several studies have shown a correlation between being overweight and HS. This may be due to increased friction on one’s body and being more prone to excessive perspiration.
  • Smoking – Smoking tobacco has been linked to HS as well.

As a result, it’s recommended for patients to maintain a healthy weight and to refrain from smoking.

6. HS can cause various complications

Persistent HS, especially when severe, can cause a number of complications, including skin infections and scars. The scarring can also interfere with lymph drainage, which can result in swelling in the arms, legs, or genital region. Sores and scar tissue can also restrict one’s movements, or make it too painful to move, especially when the disease impacts the armpits or groin area.

7. HS can also impact one’s mental health

HS can also impact one’s self-esteem and well being. For example, the location of the skin lesions, as well as issues like drainage, scarring, and malodorous smell can cause embarrassment, and make patients reluctant to go out in public or engage in activities that may reveal their skin, such as swimming. The resulting social isolation can lead to overwhelming sadness or even depression. In fact, many patients with HS go undiagnosed for years because they are too ashamed to speak with a health care provider about their symptoms.

8. HS occurs in tandem with several conditions

According to the HS Foundation, research has found that certain health conditions (called ‘comorbidities’) commonly occur in tandem with HS. These conditions include metabolic syndrome, polycystic ovarian syndrome (PCOS), diabetes, inflammatory bowel disease, heart disease, acne, and more. HS is sometimes referred to in other countries as ‘acne inversa’, although it isn’t a type of acne.

9. There is no cure, but treatments can help

Treatment for HS depends on what clinical stage a patient is in and the severity of their condition. Mild HS is treated with antibacterial soaps, anti-inflammatory medications, and warm compresses. It’s also recommended to wear loose-fitting clothing. More severe forms of the disease may require antibiotics, oral retinoids, anti-inflammatory drugs, corticosteroids, hormones, and TNF-alpha inhibitors. Other treatments include laser hair removal, radiation therapy, carbon dioxide laser therapy and surgery to remove the affected area.

10. There is hope

If you or a loved one has been diagnosed with Hidradenitis Suppurativa, visit the Hope for HS website, which has an extensive library of patient resources, including information about wound care and listings for nationwide support groups. The organization also lists out clinical trials that patients can participate in, as well as recent research and news items, so that you can stay on top of the latest developments about the disease.

Thank you for stopping by Autoimmune Warrior. If this article was informative to you, please like, share and comment below!

April is Sjogren’s Awareness Month; Read My Story

Hello Autoimmune Warriors! I hope you’ve all had a great start to April, despite the coronavirus pandemic that we all find ourselves in. April is actually Sjogren’s Syndrome awareness month, and as such, I wanted to share my own story battling this autoimmune disease here on the blog as well as on social media.

Name: Isabel

Current age: 27

Age when diagnosed: 20

City/State: San Diego, California

Please finish with the following sentence: “Since I was diagnosed with Sjögren’s, I have learned…”

…that self-care is extremely important when you have a chronic illness. After I was first diagnosed, I continued to push myself physically, academically and professionally the way I would have pre-diagnosis. But it’s really important to listen to your body and take it easy sometimes, even if that means it will take longer to accomplish your goals.

What are your most difficult symptoms?

Right now, joint pain, particularly in my hands, is my most challenging symptom. However, eye and mouth dryness, fatigue, and brain fog have been difficult for me as well.

How has Sjögren’s affected your life and how have you been able to effectively cope with the complexity of symptoms?

It takes me longer to accomplish tasks than it did before, due to chronic pain and fatigue. I have to go to the dentist a lot to take care of my oral hygiene, and I see different specialists for each of my symptoms. I also take various medications to cope with symptoms like dryness and joint pain. Other than taking medications, I cope with the symptoms by connecting with others living with the disease on social media and through my blog, autoimmunewarrior.org.

What do you wish people knew about your Sjögren’s?

It’s not just dry eyes and mouth, and even those symptoms can be debilitating if they’re severe enough. This disease involves the whole body, and it’s a lot more than just a small ‘nuisance’, which is what it’s often portrayed to be.

Given recent global events amid the coronavirus/COVID-19, do you have any specific concerns because of Sjögren’s? 

As part of my treatment plan, I take immunosuppressant medication, which I’m afraid puts me at greater risk of not being able to fight off an infection, like COVID-19, if I were to catch it.

What’s your best Sjögren’s tip?

Find a team of medical professionals, including a rheumatologist and dentist, who are knowledgeable about Sjogren’s and have experience treating this disease specifically. Unfortunately, based on personal experience, I’ve found that few medical professionals are truly educated about the impact that Sjogren’s has on patients, so it’s important to connect with those that really understand the complexity of the disease and how it manifests.

Thank you for reading my story! If you’d like to learn more about how I was diagnosed with Sjogren’s, please visit the following article: My Struggle with Autoimmunity: Part 1.

If you’d like to share your own story, please visit the This Is Sjogren’s webpage on the Sjogren’s Foundation website to learn how you can be a part of the #ThisIsSjogrens awareness campaign.

Critical Autoimmune Treatment Becomes Scarce as Trump Touts Possible COVID-19 Benefits

A health care professional holds up Plaquenil, which is being explored as an experimental treatment for COVID-19 (Photo credit: The New York Post).

Last week, I stopped by the pharmacy to pick up my prescriptions – a normal occurrence for any autoimmune disease patient. As I waited in line, a heard a young woman ask for Plaquenil, an anti-malaria drug commonly used to treat autoimmune conditions such as lupus, rheumatoid arthritis (RA), and Sjogren’s Syndrome.

Unfortunately, the pharmacist responded that they were completely out of Plaquenil, and they weren’t sure when they were going to have the medication in stock again. The patient, looking upset, left the pharmacy empty-handed.

It’s no surprise that Plaquenil, and its generic counterpart, Hydroxychloroquine, is in short supply. During recent press conferences, President Trump claimed that the drug had potential to treat those suffering from COVID-19, the disease caused by the novel coronavirus. He was swiftly contradicted by his top infectious diseases adviser, Dr. Anthony Fauci, who said that the evidence that the drug was helpful for the virus was anecdotal at best.

Despite the experimental nature of the drug for treating COVID-19, this hasn’t stopped people from trying to stockpile the drug. In fact, a recent New York Times article stated that pharmacy boards have discovered that doctors are hoarding the medication by writing prescriptions for themselves and their family members. The situation is especially dire in the states of Idaho, Kentucky, Ohio, Nevada, Oklahoma, North Carolina, and Texas.

The American Medical Association’s president, Dr. Patrice Harris, denounced the practice, saying that the association “is calling for a stop to any inappropriate prescription and ordering of medications…and appealing to physicians and all health care professionals to follow the highest standards of professionalism and ethics.”

As a result, a number of pharmaceutical boards have imposed restrictions, such as barring pharmacies from dispensing both chloroquine and hydroxychloroquine unless the prescription includes a written diagnosis of a condition that the drugs have been proven to treat. Other rules include limiting the prescription to a 14-day supply unless a patient has previously taken the medication.

Still, not every state’s board has taken action to ensure that the drug is made readily available to autoimmune disease patients. As a result, the Lupus Foundation of America, Arthritis Foundation, and other medical associations have issued a joint statement urging the White House to ensure access to the medication during the COVID-19 crisis, citing the fact that it is the only known drug shown to increase survival in patients with lupus.

For Sue Hauk, a 48-year-old lupus patient from Conshohocken, Pennsylvania, Plaquenil has been a lifesaver. Her main lupus symptoms include: joint pain, chest pain, fatigue, and nausea, which this medication helps to keep in check. When she first heard reports of the medication being scarce, she contacted her pharmacy to request a refill of her prescription, but they couldn’t offer her more than a five day supply. She then called seven different in-state pharmacies, and then five out-of-state pharmacies – each were either out of stock, or refused to fill her prescription since she wasn’t an existing customer.

“I thought, that can’t happen to me, because I’m on this and this is my life-sustaining drug. If I can’t find more, once it’s out of my system I don’t know what will happen,” Hauk said. “I’m at a loss right now.”

Sue Hauk, a lupus patient, is concerned that she won’t have access to her life-saving medication due to the COVID-19 pandemic (Photo credit: PBS).

There are over 1.5 million Americans living with the autoimmune disease lupus, who could be adversely impacted by the unnecessary stockpiling of this medication. While it’s funny to joke about people stockpiling items like toilet paper, hoarding medication has much more serious consequences.

Samantha Wayne, another lupus patient who has been taking the drug for the last 12 years, said in her YouTube video that hydroxychloroquine ensures that her symptoms don’t flare up and cause more inflammatory damage. She says it also prevents many patients from having to utilize more intensive therapies, such as immunosuppressant organ transplant drugs or chemotherapy. She also points out that this may be the only treatment deemed safe for use for pregnant autoimmune patients. She concludes the video stating that while she’s concerned about finding a way to combat the coronavirus, “those of us with autoimmune issues, such as lupus, we matter too.”

Samantha Wayne, a lupus patient and YouTuber, is raising awareness about the consequences of autoimmune patients not having access to hydroxychloroquine (Photo credit: Live Hope Lupus).

Cindy Messerle, CEO of the Lupus Foundation of America‘s Philadelphia Chapter, echoed those sentiments, saying, “I do hope that a treatment for COVID-19 is found ASAP. If it happens to be with hydroxychloroquine, the important thing is that people who take in on a daily basis for lupus and other autoimmune diseases have uninterrupted access to their medication.”

To read more about our coronavirus coverage, check out the following blog posts:

Young Autoimmune Patients Raise Awareness Amid COVID-19 Pandemic

As the COVID-19 pandemic continues to spread across the globe, young patients with autoimmune disease and other chronic illnesses are using the hashtag #HighRiskCovid19 to raise awareness about their conditions.

Although many media outlets and government officials have stated that young individuals need not worry about the coronavirus, and that it’s primarily older individuals who are the most at risk, immunocompromised young people are telling their own story. Whether they take immunosuppressants for their condition, or are at risk due to the nature of their chronic illness, these patients are asking their peers to keep them in mind when they consider venturing out instead of remaining in self-isolation.

Brittania, a 20-year old young woman from Jamaica, tweeted: ‘Hi, I’m 20 and I have Systemic Lupus Erythmatosus (SLE)/Lupus Nephritis. I take immunosuppressants to keep my body from attacking itself. I’m amongst those who have to self-isolate to stay healthy for a majority of this year. So please keep me/others in mind when you think you ‘can’t stay in’.

Sarah Elliott, from San Francisco, California, added: ‘I have multiple sclerosis (MS) and take an immunosuppressant drug for it. I also have severe asthma and take a controller medication as well. I have 2 kids and I would love to watch them grow up. Please help protect us!’

Nancy Mendoza, an autoimmune patient with Rheumatoid Arthritis (RA), also tweeted: ‘I’ve been on immunosuppressing meds for 15 years for rheumatoid arthritis. Stay home. Flatten the curve. People like me are depending on you.’

Others decided to use the trending hashtag to raise awareness on behalf of a loved one with a chronic illness. A man from Medicine Hat, Alberta, Canada, for example, implored: ‘This is my wife. She is on immunosuppressive infusion therapy battling ulcerative colitis and rheumatoid arthritis. She is among the high risk during this COVID-19 pandemic. I’m putting a face to the most vulnerable. TAKE THIS SERIOUSLY.’

Personally, I am also taking greater precautions as the coronavirus spreads further into our communities, since I take immunosupressant medication for Sjogren’s Syndrome and Hidradenitis Suppurativa. I also have asthma, which puts me at a greater risk for serious pulmonary complications, like pneumonia, since the virus is respiratory in nature. Thankfully, I’m able to work remotely, limiting my exposure to others, and my husband has taken on any duties that require us to set foot outside, including grocery shopping.

Do you or someone you love have an autoimmune disease, and are therefore at a greater risk for complications associated with the coronavirus? If so, please comment below and let us know how you’re handling this public health scare as a #HighRiskCovid19 patient.

Autoimmune Patients Urge Public to Take Coronavirus Seriously

Close-up image of the coronavirus (COVID-19) from the Centers for Disease Control & Prevention.
Image of the coronavirus (COVID-19) courtesy of the Centers for Disease Control and Prevention (CDC).

The coronavirus (COVID-19) pandemic has taken the world by storm, causing what many perceive to be a case of mass hysteria. But for those living with a compromised immune system, the ‘hysteria’ is not unwarranted.

Amber Beckley, a 33-year-old mother from Sandusky county, Ohio, suffers from a rare autoimmune condition called common variable immunodeficiency (CVID). The condition makes her bone marrow unable to produce the antibodies that fight against infections. As a result, she’s terrified of contracting the coronavirus, since she’s a high-risk patient.

“My immune system is at five percent,” said Beckley. “If I caught it, even with treatment from doctors and hospital and ICU, me fighting it off is just not going to happen.” 

Amber Beckley, a 33-year old mother, suffers from CVID, leaving her at-risk for death if she contracts the coronavirus.

Beckley also added that the only way to treat her condition is to get an infusion of antibodies from healthy patients, a treatment she’s been receiving for the last seven years. Unfortunately, her nurse has advised her against leaving the house, to reduce her risk of being exposed to COVID-19 – as a result, she can’t get the life-saving treatment she needs. She also thinks that healthy patients aren’t taking the disease seriously enough.

That’s a position with which Angela Michelle of San Antonio, Texas agrees. Michelle suffers from an autoimmune disease as well – antiphospholipid syndrome (APS), which causes clotting in her arteries and veins. The condition has caused her to have a stroke, and also affects her lung function by causing her to develop pulmonary hypertension. Having a lung disease puts her at an even greater risk if she were to catch the coronavirus, since the virus is respiratory in nature.

“I think it’s been really disheartening for us to see the general public not take it as seriously as we feel like it should be because they don’t think it’s going to affect them. And for us, it does affect us,” she said.

Angela Michelle of San Antonio, Texas, is an antiphospholipid syndrome patient who feels the public isn’t taking the coronavirus as seriously as they should.

Michelle had a medical procedure planned in San Diego, California, but since her flight was cancelled, she’s no longer able to have the procedure done. What really worries her is that medical facilities may become so overwhelmed dealing with the outbreak, that they won’t be able to effectively treat her should she get infected.

Heather Millen, a 42-year-old from Brooklyn, New York, has multiple sclerosis (MS), an autoimmune condition that damages the myelin sheath coating one’s nerves in the brain and spinal cord. She feels that she and others with compromised immune systems have been brushed off by media and politicians alike.

“I feel like people with MS and other people who are high risk are constantly being dismissed,” she lamented. “I feel like the coronavirus is being so underplayed.”

Heather Millen (R) pictured here with her sister (L), an autoimmune disease patient who passed away from H1N1 in 2009.

Millen’s own sister, Denise, also suffered from an autoimmune disease, but passed away when she contracted the H1N1 virus (also known as the ‘swine flu’) back in 2009. Seeing the global health crisis now brings back terrible memories of watching her sister’s body shut down.

“Any time people with MS get any kind of infection, it can be a trigger for their symptoms and make them worse,” said Amesh Amalja, MD and infectious disease expert at the John Hopkins Center for Health Security. “Many are on immune-suppressing medications…So if they do get infected, it could be severe.”

Dr. Murray Cohen, an epidemiologist, adds that it’s important to assess your personal risk for the disease, especially since even mild cases of the disease could lead to pneumonia.

“When we have pulmonary disease, coronary disease, autoimmune diseases — we’ve got no way to fight this virus since there is no treatment,” Dr. Cohen explained. “The only defense you have if you get infected is your immune system fighting that virus. One of you is going to win, and one of you is going to lose.”

That’s why it’s extremely important that even if you’re not high-risk for succumbing to the coronavirus, that you take precautions to help prevent the spread of the virus to those who are immunocompromised. Ultimately, ‘being seen’ is what autoimmune disease patients like Millen want.

“Those people that are being discounted by every news program and government official, they’re people. What about those people?” she countered.

Thank you for reading! If you’re an autoimmune disease patient, what precautions are you taking against the spread of COVID-19? Let us know in the comments below!

Women and Autoimmune Disease: Combating Gender Bias in Medical Treatment

A female jogger runs outside to exercise good health for autoimmune disease

Happy International Women’s Day! In honor of this day, I wanted to share a blog post specifically about women and autoimmune disease.

Women Suffer from Autoimmunity More than Men

According to the American Autoimmune and Related Diseases Association (AARDA) almost all autoimmune diseases are more prevalent in women than in men. For example, with the autoimmune condition systemic lupus erythmatosus (SLE), 9 out of 10 patients are women. Why is this, and what unique challenges does being a women present in the diagnosis and treatment of autoimmune disease?

Women Are More Vulnerable to Autoimmune Disease

According to a groundbreaking study from the University of Gothenberg, due to hormonal influences, women are more vulnerable to autoimmune diseases than men. The study found that the male sex hormone testosterone provides protection against autoimmune disease. Since men have ten times more testosterone than women, they have more protection from rogue immune cells than women.

The study explains that testosterone provides protection against autoimmune disease by reducing the quantity of B cells in the body. B cells are a type of lymphocyte (immune cell) that releases harmful antibodies. Testosterone provides protection against B cells by suppressing BAFF, a protein that makes B cells more viable. When testosterone is eliminated, the result is more BAFF, and thereby more surviving B cells in the spleen.

This is why testosterone is critical to the prevention of autoimmune disease, and why women are more vulnerable to autoimmunity due to having less of this hormone.

Challenges Women Face in Diagnosis and Treatment of Autoimmune Disease

Women face an uphill battle when it comes to the diagnosis and treatment of autoimmune disease. According to Penney Cowan, Chief Executive of the American Chronic Pain Association, physicians tend to dismiss women’s pain more than they do men’s. Women are often told that the pain is ‘all in their head’, or, in the case of gender-specific conditions, such as endometriosis, that the pain is just a ‘normal part’ of being a woman. Other research has found that physicians are more likely to attribute women’s pain to psychosocial causes, like stress or family issues, while attributing men’s pain to an underlying physical problem. Medical professionals also order more lab tests for male patients presenting similar symptoms as compared to female patients.

Diane Talbert, an African-American woman from Virginia, spoke to over 10 physicians for over a decade about the pain she suffers from psoriasis, an autoimmune condition of the skin, that she’s had since childhood. However, her complaints were dismissed as psychological or attributed to menopause. It wasn’t until she was in so much pain that she could no longer lift her arms above her head, that a Rheumatologist diagnosed her with Psoriatic Arthritis, a painful autoimmune disease that affects about 15% of patients with Psoriasis.

A Harvard Medical Review piece titled Women in Pain: Disparities in Experience and Treatment further explored the frustrations women experience when trying to get a diagnosis and treatment. The author cites evidence that while 70% of chronic pain sufferers are women, 80% of all pain studies are conducted on male mice or men! Since women also experience different symptoms than men, such as in the case of heart attacks, physicians are also less likely to recognize the condition in women, and may prematurely discharge a woman who has just suffered a heart attack, since she’s not presenting the symptoms a man normally would.

The author also points out that because autoimmune diseases like multiple sclerosis, rheumatoid arthritis and other connective tissue conditions are chronic in nature, they’re not likely to just ‘go away’ on their own, and require active treatment to prevent further damage to one’s tissues. That’s why, if a woman doesn’t get a diagnosis due to gender bias, the consequences could be dire to her health.

Combating Gender Bias in Medical Treatment

So, what can we as women do in order to combat gender bias that medical professionals have against us? As I discuss in the blog post When Your Doctor Doesn’t Believe You, the key to ensuring you get the medical treatment you need is to stand up for yourself and be as assertive as possible. Another tip that I’ve found over the years is to bring someone else with you to your appointments that can be your advocate – someone who can attest to the fact that you’re no longer able to do the things you used to due to your medical issues. While it’s unfortunate that we as women have to rely on others to advocate for us, sometimes this is the anecdotal ‘evidence’ that a physician needs to hear in order to take our plight seriously. If your doctor still doesn’t budge, then find a new provider who will actually help you get the treatment you need and deserve.

Do you believe that you’ve experienced a medical bias when getting a diagnosis or treatment for your autoimmune condition? Please share your experience by commenting below!

Other related articles:

How One Woman Lives Her Best Life Battling Two Autoimmune Diseases

Lisa Diven, a lifelong athlete, has battled two aggressive autoimmune diseases

Lisa Diven was a 23-year old athlete and recent university graduate when she first began what would become a long battle against chronic illness. Armed with a degree in mechanical engineering, she was ready to take on the world. Her health, however, had other plans.

Lisa was running 10 miles a day in preparation for a marathon race when she began to experience pain in her foot. Thinking that it was just a stress fracture, she avoided seeing a doctor until the pain worsened. When she finally did see her physician, he also thought it was just a stress fracture. Six months later, however, the pain had gotten even worse, and Lisa was forced to see a Rheumatologist, who diagnosed her with Rheumatoid Arthritis (RA), an autoimmune disease causing painful inflammation in one’s joints.

Although Lisa was relieved to put a name to her pain, she encountered another uphill battle. As a result of step therapy, her medical insurance required her to use less expensive treatments to prove they didn’t work until she could take the more expensive biologic medications that her doctor recommended. Consequently, Lisa was forced to take medications for six months, during which time her symptoms worsened and she experienced irreversible joint damage. Once Lisa finally started taking the biologics, her symptoms began to improve.

For the next 10 years of her life, rheumatoid arthritis continued to ravage Lisa’s every joint. Though she was able to control the disease with treatment, pain was still a major aspect of her life.

Eventually, Lisa and her husband decided to start a family. Due to the high-risk nature of the pregnancy, Lisa went to a high-risk obstetrics practice. Though she got through the pregnancy okay, she experienced a massive flare three months post delivery, and the medications that she had used with success previously no longer worked. She lost her appetite and lost weight, and she experienced migraines, vertigo, anxiety and depression. Lisa was forced to go on an extended medical leave, and later left her job completely. After seeing various specialists, Lisa was diagnosed with systemic lupus erythematosus (SLE), another autoimmune disease that causes widespread damage to the body’s vital organs, skin and joints.

Lisa is now being actively treated for lupus, all while controlling her existing RA symptoms. She is happy to report that she finally feels like she is returning to being ‘herself’ again. One of the things that helped Lisa the most was connecting with other patients through the Arthritis Foundation, through which she later started a local support group to help others living with the disease. These days, Lisa feels healthy more often than sick, and given her tumultuous health history, that’s a win she’ll take.

To read more about Lisa’s battle with autoimmune disease, visit healthywomen.org.

8-Year-Old Who Died from Autoimmune Diseases Leaves Legacy List of Rules

Ellie Pruitt was an 8-year-old girl who left a legacy of wisdom after passing from autoimmune diseases

Ellie Pruitt was an 8-year-old girl from Canton, Georgia, who passed away from various autoimmune diseases.

When Ellie was just three years old, she began to complain of pains in her legs and fatigue. Ellie’s parents took her to a Pediatric Rheumatologist who confirmed that she had juvenile rheumatoid arthritis, an autoimmune condition causing painful inflammation in the joints. She took steroids and received injections of methotrexate, a disease-modifying anti-rheumatic drug designed to reduce the inflammation.

During Ellie’s short lifetime, she participated in medical studies to determine what causes autoimmune disease. Both of her parents, Heather and Chuck Pruitt, have autoimmune conditions themselves; Heather was diagnosed with type 1 diabetes when she was a college senior, and Chuck was diagnosed with lupus at age 15.

In addition to the medical studies, Ellie and her family participated in the Walk to Cure Arthritis. They formed a team of families representing four children with the condition, called the Woodstock Warriors Against Juvenile Arthritis. Their team raised more than $5,000 for the cause.

Ellie participated in the Walk to Cure Arthritis with her family

After Ellie passed away on February 6th, her parents found a list of ‘rules to live by‘ that she had written. The rules were: 1) Have fun 2) No fighting 3) No pushing, shoving or hitting, and 4) Always love. After her parents found the list of rules, they decided to share it with her classmates to help comfort them after her passing.

Ellie Pruitt’s list of rules to live by

“It’s amazing that an 8-year-old little girl knew what we should focus on,” her mother Heather Pruitt said. “She started [rule] number 5, but erased it, because she knew that’s the greatest…If you can do all those things, you’re going to be in good shape.”

As a tribute to young Ellie’s wisdom, her hometown decided to display her list of rules in various places around their community. Local businesses like Bruster’s and Chick-fil-A displayed rules 1 and 4 on signage outside their stores.

Chick-fil-A displays a sign with two of Ellie’s rules on it

According to Ellie’s obituary, she was very artistic and loved to do crafts, draw, and paint. She was also a dancer and a musician (she played the piano). Her favorite places were school, church and the beach.

If you enjoyed reading about Ellie’s story, please don’t forget to like, share and comment below! Also, subscribe for more autoimmune disease news.

Mattel Releases Diverse Barbie Collection, Featuring Dolls with Autoimmune Diseases and Disabilities

The New Line Features Dolls with Vitiligo, No Hair and Prosthetic Limb

Toymaker Mattel is drawing headlines with its latest Barbie collection, featuring a new line up of dolls with autoimmune diseases and disabilities, as well as a more diverse depiction of beauty.

The lineup includes a doll with vitiligo, an autoimmune condition in which the body attacks and destroys the cells that produce melanin, a pigment that give the skin color. This results in white patches or irregular shapes on the skin that can grow and spread.

Stella Pavlides, President and Chief Executive of the American Vitiligo Research Foundation in Clearwater, Florida, applauds the move by Mattel to showcase dolls with the condition. She says that children living with vitiligo could benefit from a doll that looks like them, especially when it comes to dealing with the social stigma of the disease. Pavlides, who has vitiligo herself, recalls that the social stigma of growing up with the condition was so severe, that store clerks would refuse to take money from her hand.

The lineup of Barbie dolls also features another model with no hair, which could be appealing to young girls who suffer from alopecia, an autoimmune disease in which the body attacks and destroys hair follicles. Conversely, the line also includes a male Ken doll with long, luscious locks, rather than the traditional preppy crew cut.

The South China Morning Post reports that the move by Mattel represents a broader move by society to be more accepting of diverse representations of beauty. For example, Canadian model Winnie Harlow is famous for becoming the first supermodel with vitiligo, and Congresswoman Ayanna Pressley recently revealed her battle with alopecia.

Mattel’s new collection of barbies also includes a doll with a golden prosthetic limb, demonstrating that beauty comes in all forms, and includes those with disabilities, too. In 2019, the company had released a doll in a wheelchair as well.

Mattel reports that over half of their dolls sold by the company came from a diverse set of backgrounds. In fact, a spokesperson for the company stated that their top selling doll was an African-American Barbie with an Afro.

What do you think of Mattel’s move to showcase more diversity in their dolls, particularly those showing chronic illnesses and disabilities? Leave your thoughts in the comments below!