26-year-old Mylen Walker is raising awareness about an autoimmune disorder that he’s had since he was a young teenager.
Walker, who is based in Long Beach, California, developed Vitiligo when he was just 13 years old. Vitiligo is an autoimmune condition that occurs when the body’s immune system attacks melanocytes, the skin cells that produce melanin, the substance that gives skin its pigment. As a result, those with Vitiligo often have patches of discolored skin that become larger over time.
For the next five years of his high school career, Walker wore makeup everyday to hide the patches of lighter skin on the right side of his face. He also suffered from depression and anxiety.
When Walker entered college, however, he had a pivotal moment when he decided to embrace his Vitiligo as part of who he was.
“At first I thought [Vitiligo] was a curse,” Walker shared. “But it turned out to be a blessing because it really made me who I am today.”
Walker created his own clothing line, called Nobody’s Perfect, which encourages others to be comfortable in their own skin. He also started recording music, releasing his first single, “Psyche” under the name Mylen Makes on Spotify and Apple Music.
“The main reason for [creating art] was to make sure that nobody felt how I felt during my darkest days,” he said. “You know, having no support, having no one to talk to.”
Walker hopes to continue to inspire others to love themselves with his music. He explains, “There is nothing that a negative person can say to me that I haven’t said to myself already. I just want to give back as much as possible. I never want anyone to feel how I felt when I was at my lowest.”
Professors Joshua Ooi and Eric Morand of Monash University. Photo courtesy of VESKI.
An Australian study on the autoimmune disease Lupus published in Nature Communications is being hailed as a major breakthrough.
The study was led by researchers Eric Morand, Joshua Ooi, and Peter Eggenhuizen of Monash University. The study involved harnessing molecules from healthy patients, and using them to re-program faulty antigen-specific regulatory T cells, known as “T-regs,” in Lupus patients. This halted the autoimmune response, while still preserving the integrity of the patients’ immune systems.
Professor Morand explained, “We can take genetic information from a healthy person without autoimmune disease, put that genetic code into the cells of a Lupus patient…and switch off the autoimmune reaction.”
According to the Lupus Foundation of America, more than 5 million people worldwide have some form of the disease. Although the study focused on Lupus patients, the researchers believe that their findings could potentially help millions of patients worldwide suffering from different autoimmune conditions far beyond Lupus.
“We have established a platform where we are confident the treatment can be easily repeated as needed,” Professor Morand said. “This technology can potentially address a spectrum of autoimmune diseases, offering tailored treatments for patients.”
Professor Eric Morand with Lupus Victoria founder Vu Nguyen. Photo courtesy of Monash Health.
Vu Nguyen, founder of the Australia-based non-profit organization Lupus Victoria, believes that the study will help patients living with this chronic autoimmune condition immensely. Vu was diagnosed with Lupus when she was just nine years old. Her first symptoms were joint pain and swelling. Since then, she has experienced kidney problems and had a stroke at 22. She now has epilepsy, which is secondary to Lupus.
She said, “This new treatment will really help people living with Lupus; if the treatment was around 30 years ago it would have made a real difference for me. It could really cut down the many different types of medicines we take. With this procedure, we could possibly need just one treatment.”
The next step is for the research to be applied in human trials before a treatment can be commercialized. The researchers are optimistic that human trials will be underway within the next two years.
Latoya McDonald stands beside Dr. David Benavides of the University of Maryland, who treated her for a neurological autoimmune condition. Photo courtesy of TODAY.
40-year-old Latoya McDonald of Baltimore, Maryland, noticed that she was experiencing troubling symptoms. She was becoming increasingly forgetful, even forgetting to pick her daughter up from school. She was also extremely fatigued, and fell asleep behind the wheel of her car. She initially dismissed her symptoms, but they soon worsened.
She began to experience hallucinations – seeing and hearing things that just weren’t there. She began talking to inanimate objects. She became confused, driving to an office for a job interview, which didn’t exist. Her daughter grew increasingly concerned.
“I wasn’tgoing to a job interview because there was no job,” McDonald said. “But there was something in my mind telling me that I had a job interview.”
McDonald said that she was brought to the psychiatric ward of the hospital. The medical staff wrote of her symptoms as bipolar disorder and schizophrenia, and she was sent home.
But McDonald and her boyfriend felt that something else was going on. In addition to confusion, memory loss, and fatigue, she was now experiencing seizures as well. Listening to her gut instinct, she pursued further testing, including blood tests and a spinal tap, which revealed the true nature of her symptoms. McDonald didn’t have mental illnesses, she actually had a rare neurological disorder called autoimmune encephalitis.
What is autoimmune encephalitis?
Autoimmune encephalitis occurs when the body’s own immune system mistakenly attacks brain tissue. This can occur when the immune system detects a threat, such as cancer cells, and starts by attacking the proteins found in those cancer cells. However, these proteins are structurally very similar to proteins found in certain parts of the brain. As a result, immune cells start to attack brain tissue as well.
For Latoya McDonald, undiagnosed ovarian tumors caused her to develop autoimmune encephalitis. One type of ovarian tumor, called a teratoma, is most likely to cause anti-NDMA autoimmune encephalitis. NDMA are receptors in the brain which are sometimes found in tumors as well.
Dr. David Benavides of the University of Maryland Medical Center treated McDonald when she was battling encephalitis. Dr. Benavides explained, “Teratomas are benign. They tend to be very slow growing and to not be associated with symptoms, which means they can be easy to miss.”
Autoimmune encephalitis: a long road to recovery
McDonald had surgery to have the teratomas removed, but this was just the first step in her long road to recovery. She needed to be put on a breathing tube, and her seizures, heart rate, and blood pressure needed to be stabilized. She received chemotherapy – not to treat her tumors, which were benign – but to suppress her overactive immune system.
McDonald commented on her long and difficult recovery from autoimmune encephalitis: “Waking up, knowing what you’ve been through for almost four months, was pretty wild to me… I was like, Wow, it’s winter out? I missed the summer? I had to learn how to walk, talk, eat — everything.”
She also knows that the toll this disease took wasn’t just physical, but mental and emotional as well. She began receiving therapy so that she could feel more confident about living independently again.
She shared her advice for anyone going through health struggles: “I tell women all the time to stay on top of their yearly physicals. Don’t ignore anything, because that’s what I did.” McDonald said she had a noticeable lump in her pelvis, which turned out to be the ovarian tumor which set off her immune system.
She also advised patients to “Be persistent, ask questions. And if that doctor isn’t giving you what you want to hear, go to the next.”
To read more about Latoya McDonald’s story, visit Today.com.
Rebecca Lobo, PhD, struggled to find a diagnosis for her autoimmune disease for 15 years. Image courtesy of CBS News Sacramento.
Rebecca Lobo was working on her PhD in nutritional biology at UC Davis when she began to experience troubling symptoms, including recurrent sore throats, sinus infections, cognitive and physical fatigue, and severe pain. She even experienced issues with her skin, including hives, rashes, boils and bruises, and struggled with her weight. She became increasingly anxious and depressed.
Recounting her experience, Lobo said: “Doctors just kept saying your tests are normal, make sure you’re eating well and sleeping properly. And I was going, ‘I’m doing all of that, but I’m still struggling.'”
She consulted about half a dozen physicians, until, at the recommendation of a friend, she was introduced to doctor who was willing to go the extra mile.
“[She] took an hour and a half and took my whole medical history and helped me piece together some parts of the puzzle,” Lobo said.
This lead Lobo to be diagnosed with Sjogren’s Syndrome, an autoimmune disease in which the body’s own immune system attacks the exocrine, or moisture-producing, glands. It is one of more than 100 autoimmune diseases that are known to scientists, but lesser-known and hard to diagnose due to its similarity with other health conditions.
Dr. Nancy Carteron is a rheumatologist and immunologist who has been treating Sjogren’s patients for over 20 years.
“[Sjogren’s] can be triggered by a number of things, including genetics, medication, stress, and viral infections. Not everybody has the classic symptoms of dry eyes, dry mouth, and joint pain,” Dr. Carteron explained.
When it came to Lobo’s treatment plan, she initially took six different medications to help control her symptoms. But, feeling as though the prescriptions weren’t getting to the root cause of her health issues, and armed with her PhD in nutritional biology, she decided to take a more holistic approach to her health.
“I have really tuned into my metabolism,” Lobo said. “Understanding the mechanism and workings of my body and what is going on has helped me manage my Sjögren’s. I have a way better life than I have ever had in my whole life,” she declared.
Recalling the frustrating experience of searching for a diagnosis, Lobo said, “The unfortunate reality is that people with Sjogren’s are questioned, doubted, labeled, and dismissed as anxiety-riddled, depressive, hormonal hypochondriacs.”
Since it took her 15 years and half a dozen doctors to get a diagnosis, Lobo now wants to help other patients struggling with Sjogren’s. She writes for the online publication Davis Enterprise to raise awareness about the disease. She has also started her own business, a skincare line called Bexi’s, made of locally-sourced goat’s milk and honey, since skin issues were one of the worst symptoms she experienced with Sjogren’s.
Lauren Panoff was diagnosed with an autoimmune condition affecting her thyroid. Image courtesy of LaurenPanoff.com
Lauren Panoff had always been athletic, but as of late, she was struggling to keep up with her regular exercise routine. She felt more fatigued than ever, and at times, she would become light-headed, anxious, overheated, and experience a rapid heartbeat. Something felt off – so she had bloodwork done, hoping to find answers for her troubling symptoms.
Panoff’s bloodwork revealed that her thyroid-stimulating hormone (TSH) level was zero. Normal TSH levels range from 0.5 to 5 mU/L. Her doctor brushed off her concerns, since the rest of her bloodwork came back normal. But Panoff knew something was wrong, so she contacted a highly-rated endocrinologist for a second opinion.
“If there’s one thing I’ve learned in my life,” Panoff said, “it’s that your gut never steers you wrong, and mine told me that everything was not normal. I demanded follow-up testing and began searching for a specialist who could give me answers.”
Her endocrinologist ordered a thyroid scan, radioactive iodine uptake test, and bloodwork to search for the presence of auto-antibodies. Panoff’s test results revealed that she had hyperthyroidism, also known as Graves’ disease.
Speaking of her diagnosis, Panoff commented: “I felt simultaneously relieved and disappointed. What discouraged me most about my experience of being diagnosed with Graves’ disease was that nobody talked to me about lifestyle changes.”
Panoff’s endocrinologist had recommended taking radioiodine to kill her thyroid. But she didn’t feel comfortable with pursuing an invasive hyperthyroidism treatment plan so soon after being diagnosed. She inquired about alternate treatment options, and learned that she could take an antithyroid medication, methimazole, which works by reducing the amount of thyroid hormones her thyroid gland produces.
In addition to the oral medications for hyperthyroidism, Panoff also decided to make some lifestyle changes to help her put Graves’ disease in remission. She follows a plant-based diet, emphasizing legumes, vegetables, fruit, whole grains, nuts and seeds. She also switched to decaffeinated coffee to prevent rapid heartbeat.
“As a dietitian, I view nutrition as a crucial medicine,” Panoff explains. “A significant amount of research supports nutrition therapy for preventing and reversing disease, and I’m confident in my potential to experience that personally.”
In addition to a healthy, plant-based diet, Panoff said that exercise is still a core part of her life. She works out five days a week, mainly doing cardiovascular and strength-training workouts.
Panoff also thinks mental health support is important for chronic illness patients. Although she has a family history of thyroid disorders, and genetics may have been at play, she believes that her past traumas and life challenges may have contributed to her developing Graves’ disease. Leading up to her diagnosis, she went through a divorce and moved into a less-than-ideal living situation, all during the pandemic.
“My experience is not unique. Research has found that having a stress-related disorder or severe stress reaction is significantly associated with an increased risk of being diagnosed with an autoimmune disease later in life,” she explains.
To read more about Lauren Panoff’s story and her journey to being diagnosed with hyperthyroidism, visit VeryWellHealth.com.
Sjogren’s Syndrome is an autoimmune disease that causes the body’s own immune system to attack the exocrine, or moisture-producing, glands. Common symptoms of Sjogren’s Syndrome include dry eye, dry mouth, swollen salivary glands, dental decay, oral thrush, joint pain, fatigue, and brain fog. However, the disease can result in even more serious consequences like irreversible tissue damage, interstitial lung disease, and lymphoma (a cancer of the lymphatic system).
The National Institutes of Health funded the four-year research grant through the Accelerating Medicines Partnership in Autoimmune and Immune-Mediated Diseases Program (AMP AIM). The scientists who received the research grant aim to develop less invasive clinical tools to diagnose patients more effectively and identify new targets for future treatments.
“This disease is notoriously difficult to diagnose,” commented Christopher Lessard, Ph.D., one of the scientists who received the grant. “It shares features with many autoimmune diseases and lacks effective diagnostic markers, which makes studying it challenging. This grant provides us with technology to analyze the salivary glands of people with Sjögren’s in a way that wasn’t possible previously.”
According to the Sjogren’s Foundation, it used to take doctors an average of 6 years to diagnose Sjogren’s Syndrome. However, as of 2024, the disease now takes an average of 2.5 years to receive a proper diagnosis, due to the Foundation’s work raising awareness about the condition among healthcare providers and patients.
Currently, Sjogren’s diagnosis involves getting a blood test to look for antinuclear antibodies (ANA), Anti-Ro/SSA and Anti-La/SSB, and Rheumatoid Factor (RF), which are the most commonly found antibodies in patients with Sjogren’s.
These blood tests aren’t perfect, however. Darise Farris, OMRF Scientist explains, “Of the more than 600 people seen in our research clinic who met the criteria for Sjögren’s, about 40% tested negative for these autoantibodies.”
As a result, patients are often required to see an Ear, Nose, Throat (ENT) specialist for a lip biopsy, an invasive procedure which involves removing a tissue sample from the inner lip to assess for salivary gland damage. An ophthalmologist may also perform a rose bengal stain on the eyes to evaluate for patches of eye dryness, as well as a Schirmer’s test to measure tear production. A dental professional may find evidence of dental decay, like cavities, or a yeast infection in the mouth. Finally, a rheumatologist will assess for any other symptoms, like swollen salivary glands, joint pain, fatigue, or brain fog.
Because of the amount of different medical professionals involved, the diagnosis process can be exhausting and time-consuming, not to mention expensive for those who don’t have adequate healthcare coverage. Sjogren’s also bares many similarities to other autoimmune conditions, like Lupus or Rheumatoid Arthritis, so patients may end up being misdiagnosed along the way.
The OMRF’s research seeks to understand how genes, the environment, and molecular pathways contribute to Sjogren’s disease. The study will also provide opportunities for Sjogren’s patients to participate in ground-breaking research and clinical trials. To learn more, visit https://omrf.org/.
Photo illustration of Dr. Leena Danawala by Casey Shenery for statnews.com
When Dr. Leena Danawala began sharing her story living with a rare autoimmune disease, she couldn’t imagine what kind of a response she would get.
“There were a lot of people who had the same disease I had,” said the 34-year old, Chicago-based rheumatologist. “And when I talked to them about it, they were so relieved to hear that there was somebody who came out the other side and is still doing okay.”
The young physician explained that she started experiencing troubling symptoms in her early 20s. Her left eye was extremely red, indicating that she had uveitis, a form of eye inflammation. She also felt constantly sick – like she had a never-ending cold or flu. Other than that, her symptoms were largely invisible. Her parents took her from doctor to doctor, desperate for answers.
“It felt like a very long hallway that’s never going to end, because they couldn’t diagnose me at first,” Dr. Danawala explained. “For two years I was having these symptoms and they didn’t really know what it was, and none of the treatments were working.”
Without a concrete diagnosis, Dr. Danawala’s parents turned to alternative treatments, such as Indian horoscopes and puja, a ceremonial prayer to God. During this time, she felt that she couldn’t share much about her health issues publicly.
She explained, “A lot of people from India don’t really tell anyone besides close family about illnesses. I think part of it is, especially when you’re a woman, [is] marriageability. And then part of it is just you don’t want someone else knowing the family’s business, or judging you for an illness. Or it’s a fear of losing opportunities.”
Dr. Danawala’s mystery illness impacted her studies as well. She temporarily left medical school to focus on her health. She had planned to only be gone three months, but ended up taking two and a half years off of school. During that time, she says she lost friends who didn’t understand why she had left.
Eventually, her family took her to the Mayo Clinic, which gave her a life-changing diagnosis after several biopsies, medical imaging and re-testing of her bloodwork. Dr. Danawala tested positive for certain autoantibodies, which indicated that she had an autoimmune condition called granulomatosis with polyangiitis.
Granulomatosis with polyangiitis (GPA) is a form of vasculitis that affects one’s small and mid-size blood vessels, causing them to become painfully inflamed. The autoimmune condition can also cause damage to various organs, including those in the respiratory tract and kidneys. The disorder can occur at any age, but most often affects people between the ages of 40 and 60. GPA is commonly treated with an immunosuppressant drug called Rituximab, a monoclonal antibody that destroys CD20+ B immune cells, which cause damaging inflammation.
“I went through all the stages of grief during that time,” Dr. Danawala said. “The hardest part of getting a diagnosis is a loss of your sense of self — who you were as a person is no longer the same. Who I was before was very athletic, I was involved in a gazillion things at once, obviously had a lot of hobbies, a lot of social obligations. I had to cut down a lot of those things, and it made me very frustrated and also really angry that I couldn’t do the same things, angry at the limitations that I now had.”
Her diagnosis forced her to gain a new sense of identity that didn’t revolve around her external commitments. Eventually, she learned to re-integrate some of the activities that she loved, without compromising her health. With treatment, Dr. Danawala was able to return to medical school and successfully graduate. Since then, she has gone on to complete her rheumatology residency, helping other autoimmune disease patients in her practice.
To read more about Dr. Leena Danawala’s inspiring story, visit statnews.com. To learn more about granulomatosis with polyangiitis and other forms of vasculitis, visit the Vasculitis Foundation website.
A January 2023 study by German researchers suggests that your risk of developing an autoimmune disease is increased after catching COVID-19.
The study included over 38 million participants, approximately 640,000 of whom had contracted the COVID-19 virus, and the remainder being the control group. The study examined the likelihood that an individual would develop one of 30 autoimmune diseases after being infected with COVID-19.
The results of the study found that after being diagnosed with COVID, patients were 43% more likely to go on to develop an autoimmune disease. The most common autoimmune diseases that developed post-infection were: Rheumatoid arthritis, Sjogren’s syndrome, Graves’ disease, and Hashimoto’s thyroiditis. Study participants who had contracted COVID-19 were also more likely to develop, but to a lesser extent, one of: psoriasis, type 1 diabetes, ulcerative colitis, multiple sclerosis, celiac disease, alopecia, and vitiligo.
Study participants who already had an autoimmune disease faced a 23% increased risk of developing an additional autoimmune condition after COVID-19 infection, as compared to those who didn’t get the virus.
This German study adds to the body of research being conducted about COVID-19’s lasting impact on health outcomes. ‘Long COVID’, as it’s been called, can result in neurological problems, breathing difficulty, cardiovascular issues, digestive problems, and more. Now, autoimmune disease may be another outcome to add to the ever-growing list of long COVID health issues.
The results from this German research study on the connection between autoimmune disease and COVID-19 infection shouldn’t be a surprise. The risk of developing autoimmunity after a viral infection has been well documented in the past, such as the connection between the Epstein-Barr virus and autoimmune conditions like multiple sclerosis. It’s believed that through a process called molecular mimicry, viruses are able to deflect attacks from the host’s immune system, by confusing immune cells, and causing them to target healthy tissues instead.
COVID-19 patients have anecdotally shared their experiences battling autoimmune conditions after an initial coronavirus infection. Famed singer and musician Christopher Cross, for example, spoke out about his battle with Guillain-Barre syndrome after being infected. Children were also shown to be developing a condition called multisystem inflammatory syndrome (MICS) after getting COVID, which often proved to be worse than the virus itself.
For more information on COVID-19 and autoimmune disease, check out this blog post on COVID-19 vaccination and products that may help in your battle against COVID if you’ve already caught the virus.
We’re 10 days into the New Year, and I wanted to check in with my fellow Autoimmune Warriors to see how your 2023 resolutions were going.
One of my New Year’s resolutions was to get back into doing yoga. I started doing yoga as a teenager, and then moved into doing more team sports like field hockey or doing other fitness classes like pilates and spinning. But I realized these past few months how much I missed doing yoga. I think it’s great not only as a form of exercise, but to help with stress relief as well. The problem is, I moved to a new neighborhood and wasn’t familiar with the local studios in my new hood.
The great thing about the New Year, is that if you have fitness and health related goals, that there are plenty of gyms, fitness centers, and health products doing promotions around this time to get your business. I ended up finding a local yoga studio on the MindBody app that was doing a promotion for only $10 for your first class.
It’s been ages since I went to a yoga class, and although there are similarities between yoga and pilates, which I had more experience with, it’s still not the same! Doing the class made me realize how important flexibility is in yoga; at one point, we were doing a stretch where everyone ended up in the splits…except me. But I was surprised by how flexible I was given that I hadn’t been to a yoga class in ages.
Other than getting back into yoga, another resolution of mine is to be more proactive about my health. In the busyness of life, it can be easy to slip with your healthcare routine. As an Autoimmune Warrior, you probably spend a lot more time than the average person when it comes to going to doctor’s appointments, ordering and picking up prescriptions, sorting and taking your medications, getting lab work done, preparing healthy meals, and more. It’s basically like having a part-time job, on top of all of the other work that you have to do!
In my case, this means making sure I make those appointments with my various specialists, ensure that I’m getting my lab work done on a quarterly basis, making any follow-up appointments if any abnormalities arise in my labwork, and ensuring that I’m always fully stocked on my meds. It also means ensuring that I get a good night’s sleep (at least 7 hours) and do daily exercise. I’m also putting more effort into making healthier meals, and using more fresh produce from our home garden.
The interesting thing about having an autoimmune disorder is that it’s chronic in nature, meaning that autoimmune symptoms are continuous and never-ending. So it’s not like a weight loss goal, where I can say, “I want to lose 20 pounds” and then I’ve achieved the goal once I’ve lost that amount of weight. In other words, there isn’t an exact ‘outcome’ that we can really strive towards or predict. This makes measuring your goal progress a little trickier.
However, I remind myself that it’s not always about achieving a specific outcome (i.e. lose 20 lbs) but more so about adopting an overall healthier lifestyle. Do you notice that the people with the greatest longevity in the world, who live in the so-called Blue Zones, don’t ever count calories or even own a scale? It’s their daily habits that contribute to their overall healthy lifestyle.
So cheers to 2023, and I hope that your New Year’s resolutions are going well so far and continue to progress as the year goes by. Let me know your goals (health-related or otherwise) in the comments below!
Celine Dion performing during her Las Vegas residency. Image courtesy of CNN.
Decorated Canadian singer-songwriter Celine Dion reveals she was recently diagnosed with a rare neurological autoimmune disorder called Stiff Person Syndrome. The diagnosis has lead her to cancel her summer 2023 shows, as well as re-schedule others to 2024.
According to Yale Medicine, Stiff Person Syndrome is believed to be an autoimmune reaction that occurs when the body’s own immune system attacks and destroys a vital protein called Glutamic Acid Decarboxylase (GAD). This protein is responsible for making a substance called gamma-aminobutyric acid (GABA), which helps to regulate motor neuron cells, and ensure they’re not over-active.
People with low levels of GABA have neurons that continuously fire, even when they’re not supposed to. This results in debilitating symptoms like violent muscle spasms, muscle stiffening in the torso and limbs, and difficulty with walking and movement. GABA also helps to regulate symptoms of depression and anxiety, so those with Stiff Person Syndrome are at a higher risk for developing these mental health conditions.
The 54-year-old Grammy award-winning artist has said that the condition has had a profound impact on her life, commenting: “Unfortunately, these spasms affect every aspect of my daily life, sometimes causing difficulties when I walk and not allowing me to use my vocal cords to sing the way I’m used to.”
Getting diagnosed with Stiff Person Syndrome can be a challenge, since the symptoms can mimic many other neurological health conditions, like multiple sclerosis, Parkinson’s disease, fibromyalgia, and more. Patients typically undergo a thorough examination, such as blood tests and spinal fluid tests, to find elevated levels of anti-GAD antibodies, in order to get diagnosed.
Being diagnosed was not a straightforward process for Dion herself. “While we’re still learning about this rare condition, we now know this is what’s been causing all of the spasms that I’ve been having,” she said.
Although anyone can develop Stiff Person Syndrome, the National Organization for Rare Disorders reports that adults ages 30 to 60 are most commonly diagnosed with the condition. The condition is considered rare, with only one in a million individuals being diagnosed with SPS among the general population.
There is no cure for Stiff Person Syndrome, but treatments like steroids to control inflammation, plus the use of sedatives and muscle relaxants to control muscle spasms, can help. Sometimes Stiff Person Syndrome patients are also prescribed immunotherapies to help calm an over-active immune system that’s destroying their GAD proteins.
In an emotional video on her Instagram, Dion said, “I’m working hard with my sports medicine therapist every day to build back my strength and my ability to perform again. But I have to admit it’s been a struggle.”
Back in 2019, I wrote a blog post about my favorite autoimmune disease YouTubers. These are YouTube channels that I personally follow as they document life with a chronic illness.
As a follow-up to that blog post, I wanted to share my favorite podcasts on the topic of managing life with a chronic illness. Although I still do watch YouTube videos fairly frequently, I also enjoy listening to podcasts since it’s so convenient to tune into a podcast while I’m working, doing chores, driving etc. without having to watch something visual.
So, without further ado, here’s my list of chronic illness podcasts that I enjoy listening to!
1. The Chronic Illness Therapist
The Chronic Illness Therapist is a podcast run by Destiny Winters, a licensed therapist in the Atlanta, Georgia area. Destiny has several chronic illnesses herself, including Postural Orthostatic Tachycardia Syndrome (POTS), Ehlers-Danlos Syndrome (EDS), and Mass Cell Activation Syndrome (MCAS). Since she’s both a therapist and a chronic illness patient herself, Destiny understands the impact that managing an illness can have on a patient’s mental health.
As part of her podcast, she delves into a number of challenges that chronic illness patients face, including:
I have found all of these topics to be relevant to my own life, and I think that many readers would find the same. Plus, I highly appreciate her perspective as a therapist and as a patient, because not many people have both the academic and real-life expertise of both of these roles!
2. Sjogren’s Strong
Sjogren’s Strong is a podcast co-hosted by Lupe, a patient living with the autoimmune condition Sjogren’s Syndrome, and her partner Brian. I first learned about this podcast via their blog, after I was first diagnosed with Sjogren’s myself and was looking for information from other patients. The podcast delves into many subjects specific to living with Sjogren’s Syndrome, such as:
Managing common symptoms, like dry eyes, dry mouth, joint pain, fatigue, and brain fog
Sjogren’s medications, treatments, and medical insurance
Living an active lifestyle with a chronic illness
Although the podcast is clearly specific to Sjogren’s, I think it’s valuable for many chronic illness patients, such as those with Rheumatoid Arthritis and Lupus.
3. The Chronic Ills
The Chronic Ills podcast is co-hosted by Alina and Angelica, two Australian women who talk about living with a chronic illness as young adults in their twenties. Some of the topics they discuss in their podcast episodes include:
Body image with chronic illness
Medication and alternative therapies
The cost of being ill
Living with a chronic illness and anxiety about the global pandemic
Navigating relationships and friendships with a chronic illness
The portrayal of disability in the media
Alina and Angelica have had very different experiences as a chronic illness patients; one of them experienced becoming ill gradually, while the other had a sudden onset of their symptoms. What I like is that they show that not all cases are alike, and that every patient’s story is unique.
Those are the top three chronic illness podcasts that I’m listening to at the moment! Do you have any Spotify podcasts that you would recommend? Let us know in the comments below.
Hey all! It’s been a while since I last wrote a blog post. And the reason for that is…after 2.5 years of this pandemic and being fully vaccinated, I finally got COVID-19.
Getting COVID was one of my worst fears during this pandemic. As someone with an autoimmune condition, I wasn’t sure how my body would react to getting the virus. I had read stories, such as this young woman with an autoimmune condition, who had caught COVID and ended up having to get a lung transplant. It’s really scary since some people report that their symptoms are more of a bad flu, while others end up with crippling long COVID symptoms or worse, end up passing away.
It’s been a few weeks since I first tested positive, and I’m on the mend. My main symptoms were a fever, chills, sore throat, dry cough, loss of taste and smell, fatigue, joint pain, muscle soreness and weakness. As you can imagine, it wasn’t a fun recovery!
My only symptom now, a few weeks post-COVID diagnosis, is a lingering dry cough. I have asthma, and although it’s a very mild form of asthma, it definitely flared up when I got COVID.
I wanted to share some of the things that helped me recover from COVID-19 quickly when you have a compromised immune system. Of course, always talk with your doctor before beginning any kind of treatment plan or modifying your health regiment.
1. Anti-viral medication
The first thing that helped me recover from COVID more quickly was getting on anti-viral medication. The medication, called paxlovid, was developed by Pfizer and is composed of two separate medications: nirmatrelvir and ritonavir. The medication is taken orally as six pills swallowed daily – three in the morning, and three at night.
Paxlovid isn’t available to just anyone, however. You have to be at high risk for severe disease if you get COVID-19. As someone with an autoimmune condition and asthma, I definitely fit that category. I was able to get a last-minute telehealth appointment with a family doctor, and he prescribed me paxlovid, as well as some prescription cough medication.
A clinical trial showed that taking paxlovid resulted in an 89% reduction in the risk of hospitalization and death. So, if you get COVID and you’re immunocompromised in some way, I would definitely talk to your doctor to see if you can get a prescription for paxlovid or another anti-viral medication to help you recover faster.
2. Heating/Cooling Pad
Another item that really helped me recover from COVID was a lavender heating and cooling pad. I’ve talked about using a lavender heating pad in the past on this blog for general muscle aches and joint pains, but it was definitely helpful in recovering from the virus as well.
For example, when I was running a low-grade fever, I was able to put the pad in the freezer to turn it into a cooling pad, helping me cool down when I was running hot at night. When I had bad muscle aches and joint pains, I would heat up the pad in the microwave and within a minute, I was able to get some relief.
There are many inexpensive heating pads that you can find online – for example, I found this lavender heating pad from Amazon for only $12.99. You can obviously get an unscented version if you prefer, but I do enjoy the floral aroma.
3. Humidifier
As someone with Sjogren’s syndrome, having a humidifier is always a good bet, since it makes the air feel less dry and helps moisturize your immediate environment. That being said, it also helped me to feel more comfortable when sick with the virus, since COVID gave me a bad dry cough as well, not to mention I had a flare up in many of my Sjogren’s syndrome symptoms, like eye, mouth, and skin dryness.
The humidifier I use is from the brand Crane, but you can find various humidifiers online in different styles and sizes that will fit your space best.
4. Throat Spray
If you’re like me and you experience a bad sore throat and cough when you’re sick with COVID, then I’d recommend looking into an over-the-counter throat spray to help relieve some of the soreness and discomfort. You can get throat sprays with a numbing agent, like phenol or lidocaine, at most major pharmacies. I ended up picking up this cherry-flavored throat spray from CVS, and it definitely helped me get through some of my worse days.
If you’re looking for more of a natural throat spray, you can try an echinacea throat spray such as this one on Amazon for less than $12. Echinacea is a natural compound derived from perennial flowers, and has been used among Native American populations for its healing properties. That being said, echinacea is believed to work by boosting one’s immune system (like Vitamin C), so if you have an autoimmune condition, just be sure to get the go-ahead from your healthcare provider before taking any herb or medication that could increase immune activity.
Those are the items that helped me the most to recover more quickly from COVID-19. Are you someone with an autoimmune disease or other chronic illness who caught the virus? If so, what helped you to recover? Let us know in the comments below!
I’m currently reading the book Diabetes Sucks And You Can Handle It by Dr. Mark Heyman, a psychologist who lives with Type 1 Diabetes (T1D). For those of you who don’t know, T1D is an autoimmune disease in which the immune system destroys the pancreatic cells that produce insulin.
Although I don’t have type 1 diabetes myself, I started reading the book because I work for a continuous glucose monitoring company, which produces medical devices for those with diabetes to help them monitor their glucose levels. Reading about diabetes has given me some insight on what it’s like to live with this challenging chronic illness.
As I was reading Dr. Heyman’s book, I realized that there are a lot of similarities between living with T1D and other autoimmune conditions, like Sjogren’s Syndrome and Hidradenitis Suppurativa, which I live with. Being diagnosed with any kind of chronic health condition can be overwhelming, especially at first. You may think, ‘What did I do to deserve this?’ or other unhelpful thoughts. Even after the initial shock of your diagnosis wears off, there is the ongoing challenge of having to live your ‘new normal’ of life with a disease. It can also impact your ability to do the work and activities that you love.
Dr. Heyman says that the first step to living well with diabetes is to first acknowledge that IT SUCKS. This may seem counterintuitive…after all, if you’re struggling with living with an illness, thinking about how much it sucks would only make things worse, right? But Dr. Heyman says that oftentimes, those with T1D try to ignore their disease, or to think positive thoughts only – this just doesn’t work. You can’t ignore your health problems as if that’ll make them going away. And trying to force yourself to only think positively is basically the definition of toxic positivity.
As Dr. Heyman explains, the best way to live well with diabetes is to acknowledge that although it sucks, you can handle it. Here is a brief excerpt from the boook:
You can handle T1D because you have T1D. I know this sounds like circular logic, but it isn’t. Diabetes is demanding. It requires a lot from you. And you are doing it. You may not be perfect, and it may not feel like you’re doing a great job at handling it. Feeling overwhelmed, and burned out are not signs that you can’t handle T1D. The fact that you’re still living your life and want to keep improving is strong evidence that you can handle the challenging parts of diabetes because that is exactly what you’ve been doing since being diagnosed.
I have never met anyone with T1D who isn’t stronger in some way because of diabetes. You know that managing this condition day in and day out means always being on your toes. You have to make important decisions about your health, pivot your strategy regularly, and keep going, no matter what. You are already doing this.
Sometimes it may feel like you’re not doing a perfect job, and of course, there is always room for improvement. But the reality is T1D has made you stronger. You have to be resilient to survive with diabetes. The fact that you live with T1D proves you are strong. I hope you see it too.
I found this passage to be pretty relatable as someone managing multiple chronic illnesses. You may sometimes feel overburdened by your disease, but at the same time, you are made stronger by the challenges it has put you through. Maybe you’ve also become more conscientious of your health than before you were diagnosed, or it’s led you to re-prioritize your life to make space for only the things that you truly love and care about. Seeing it through this perspective doesn’t mean ignoring how hard it is to live with a disease. Instead, it’s about acknowledging how strong YOU have become in the process of managing life with a disease.
Let us know in the comments below…how has living life with a chronic illness made you stronger or more resilient?
The That 70’s Show alum said that he was diagnosed with vasculitis, an autoimmune disease that causes the body’s immune system to attack its own blood vessels, leading them to swell and narrow. According to the John Hopkin’s Vasculitis Center, the symptoms of vasculitis vary greatly, depending on which blood vessels have been impacted and the inflammatory process involved. Some of the common symptoms of vasculitis include headaches, joint pain, fever, rashes, fatigue, weight loss, rapid pulse, cough, and frequent infections. However, the disease can also cause even more severe symptoms, like kidney and lung problems, stroke, aneurysms, gangrene, deafness, and blindness.
Kutcher said in a 2022 interview that vasculitis affected his vision, hearing, and sense of balance, showing that he had a more severe form of the disease. He commented, “You don’t really appreciate it until it’s gone, until you go, ‘I don’t know if I’m ever gonna be able to see again, I don’t know if I’m gonna be able to hear again, I don’t know if I’m going to be able to walk again.’”
According to Kutcher, it took him over a year to recover from his vasculitis flare-up. The actor acknowledged that while his vasculitis diagnosis put him on a “terrifying journey” he knows that he’s “lucky to be alive”.
Unfortunately, there is no known cure for vasculitis, and the exact cause of what leads the immune system to attack one’s blood vessels is unclear. However, treatments are available to help ease the symptoms, including steroids like Prednisone, chemotherapy drugs like Methotrexate, and immunosuppressants like Cytoxan. It’s unclear what exact treatment Kutcher received after his vasculitis diagnosis.
Prominent neurologist awarded grant to research Alzheimer’s as an autoimmune disease
Alzheimer’s is the most common cause of dementia; according to the Alzheimer’s Association, Alzheimer’s disease accounts for up to 80% of dementia cases.
Although little is still known about this disease, which causes significant loss of memory and other cognitive abilities, the most well-accepted hypothesis is that Alzheimer’s is caused by the build up of a protein called beta amyloid. When too much beta amyloid is accumulated in the brain, toxic clumps of the protein, called plaques, can form. These plaques are believed to be the culprit for Alzheimer’s; as a result, recent clinical trials have aimed to find a way to target and reduce the amount of plaques in the brain.
However, a prominent neurologist and medical researcher from Toronto, Ontario, Canada has put forth a new hypothesis on the development of Alzheimer’s. Dr. Donald Weaver theorizes that beta amyloid is actually a normal part of the brain’s innate immune system, and is there to kill bacteria and serve as a messenger protein. When the body’s immune response is triggered by an infection, trauma, or exposure to noxious substances, brain cells are triggered to release beta amyloid.
The problem arises, however, when beta amyloid mistakes brain cells for bacteria, and begins to kill these cells instead. This leads to fragments being created in the brain, which go on to trigger the continued release of beta amyloid. The result is a self-perpetuating cycle of releasing beta amyloid and killing more brain cells, resulting in a chronic disease.
Dr. Weaver’s theory on Alzheimer’s as an an autoimmune disease has garnered the attention of the medical community. He has been awarded the silver Oskar Fischer Prize, a grant worth US$400,000 from the University of Texas at San Antonio, to pursue research related to his theory.
Dr. Weaver believes that by exploiting the body’s natural way of controlling the immune system, Alzheimer’s symptoms can be reduced, and the disease could even be prevented. He commented, “If we accept the fact that Alzheimer’s disease is an immune-based disease that has certain triggers, then I think that we need to go back and revisit the risk factors.” Examples of risk factors include air pollution, head trauma, and genetic susceptibility.
Ultimately, Dr. Weaver’s research represents hope for a new way of tackling Alzheimer’s disease. Even more exciting is that Dr. Weaver’s research may have applicability beyond Alzheimer’s to other neurological conditions as well, such as Parkinson’s, Multiple Sclerosis (MS), and Encephalitis.
Jenny Hsieh, director of the University of Texas at San Antonio’s Brain Consortium, believes it’s important to provide researchers the opportunity to pursue ideas that are outside the box. “We just need people to be able to work on different ideas…because the bottom line is all of the current approaches to Alzheimer’s disease [are] not working.”
To learn more about Dr. Weaver and his work, visit: www.weaverlab.ca
In 2007, Maria Alejandra Hernandez was living her best life in New York City, working her dream job as an actress. However, she started to feel unwell, and generally tired and run down. She had a kidney biopsy done, but it didn’t lead to any answers. She recovered from the mystery illness, and went on to live her life.
Four years later at age 21, her health problems resurged with a vengeance.
“It started with a pain in my finger, I remember,” Hernandez explains. “I thought I probably bumped it or I’m just stressed out. It’s probably going to go away.”
However, the pain didn’t go away, and in fact continued to spread to her shoulders.
“The pain was so excruciating, I couldn’t even lift my hands,” she says. She was hospitalized for a month, while doctors performed a myriad of tests in an effort to diagnose the cause of her sudden pains.
She was eventually diagnosed with systemic lupus erythematosus. The autoimmune disease was causing her body’s own immune system to attack her joints, resulting in the unbearable pain in her fingers and shoulders. Shortly after, she started getting rashes on her face. Butterfly rash, which is a skin rash in the shape of a butterfly that appears across the nose and cheeks of lupus patients, is a hallmark symptom of the disease.
Hernandez admits that she knew nothing about lupus prior to being diagnosed. She explains, “I thought I could tell the doctor, okay, give me the medicine so I can just get better. Well, it doesn’t work that way!”
She recounts with emotion finding out that lupus is a life-long, chronic condition: “I remember one of the doctors telling to me that there was no cure; I felt like my life ended right there.”
While 90% of lupus patients are women, the symptoms can be completely different from person to person. Hernandez says that in addition to joint pain, fatigue, and skin rashes, she also experienced weight gain, hair loss, and kidney problems. At that point, she thought that her career as an actress would have to come to an end.
Lupus put a strain not just on Hernandez’ career, but on her relationship as well. At one point, the young woman told her husband that she likely wouldn’t be able to have children, and that he should find a new relationship to fulfill his dream of having kids.
“He said, ‘No way in hell!'” Hernandez laughs. Her husband stood by her side throughout her aggressive medical treatment. She now manages her symptoms with a combination of daily prescription medications and a healthy diet. Staying positive is also an important part of maintaining her mental health.
Hernandez said that her blood tests have shown promising results that her lupus is under control. As a result, she revealed that her and her husband are looking forward to starting a family of their own.
“For Warriors like myself, [becoming a parent] might take a little longer, but I’m not losing hope,” she declared. “If I hadn’t gone what I went through, I wouldn’t be here now, raising awareness [for lupus],” she said.
“Now, lupus doesn’t control me. But I’m using it to help [others].”
Gabriella Piqueras is a 16-year-old girl living with lupus in Madrid, Spain. Her DNA may be the key to finding a genetic cause for this debilitating autoimmune disease. Image courtesy of El Pais.
Researchers have long pondered whether there is a genetic cause of systemic lupus erythematosus, known as lupus for short. Lupus is a systemic autoimmune disease that occurs when the body’s immune system attacks its own vital organs and tissues, resulting in widespread inflammation and debilitating symptoms. Now, researchers have discovered a genetic mutation in a young patient, whose DNA may be the key to finding a cure for the disease that affects at least 5 million people worldwide.
One Girl’s Case My Help Solve the Mystery
Gabriella Piqueras, a 16-year-old teen from Madrid, is the center of a new research study published in Nature magazine. Ever since Piqueras was five years old, she has suffered from debilitating symptoms, like constant bruising and bleeding beneath her skin. She was admitted to a hospital in Madrid for treatment, where she was diagnosed with lupus as the cause behind her painful symptoms.
Piqueras’ DNA was recently studied by Carola Garcia de Vinuesa, a leading immunologist at the Francis Crick Institute in London. In the study, it was discovered that she had a genetic mutation on her DNA that activates the TLR7 receptor in her cell’s membranes. This receptor activation normally causes immune cells to recognize and attack threatening viruses, but in Piqueras’ case, it causes her immune cells to attack her organs and tissues instead.
Discovering a Genetic Cause for Lupus
After discovering the genetic mutation in the patient’s cells, researchers modified the DNA of mice in a lab at Australian National University in Canberra. As a result, the mice went on to develop lupus. Lead researcher Garcia de Vinuesa commented on the study, saying: “It was already known that this receptor appeared to be activated in lupus patients, but no one knew if it was a cause, a consequence or a side effect of inflammation. Now we can show that it is the cause.”
The discovery of the TLR7 receptor as a genetic cause of lupus is significant. Not only does it show that genetics can lead to development of the disease, it could also explain why 90% of lupus patients are women. Garcia de Vinuesa explains that the instructions for making TLR7 are located on the X chromosome on our DNA. Since women have two X chromosomes on their DNA, and men only have one, women are significantly more likely to develop the disease.
Environmental Factors May Also Play a Role
Maria Galindo, a Madrid-based rheumatologist, states that although the study’s findings are important, it’s also important to consider the environmental causes of lupus as well. She explains that there is “a base of genetic susceptibility that, in the presence of external stimuli, triggers an exaggerated autoimmune reaction.” She concludes, “Everything indicates that the TLR7 pathway is very important, but it is not the only one.”
While more research is required to understand both the environmental and genetic factors behind lupus, this Spanish study sheds light on the chronic autoimmune disease that is often referred to as a ‘cruel mystery’. With more scientific research into lupus, more treatments can be developed to help the 5+ million people living with the disease worldwide. And for patients like Gabriella Piqueras, that could make all the difference.
Halsey has shared that she’s been diagnosed with several chronic health conditions. (Photo by Nina Prommer, courtesy of Rolling Stone Magazine)
Halsey recently took to social media to share that she’s been diagnosed with several chronic health conditions.
The Grammy award-winning singer-songwriter, who was recently hospitalized for anaphylaxis — a severe allergic reaction — said that her hospitalization and subsequent doctor’s appointments led to her being diagnosed with several chronic health conditions, including Sjögren’s Syndrome, Ehlers-Danlos syndrome, mast cell activation syndrome, and Postural Orthostatic Tachycardia Syndrome (POTS).
“My health has changed a lot since I got pregnant and gave birth,” the 27-year-old mom-of-one explained. “I started getting really, really, really sick — I’ve been kind of sick most of my adult life, but it started getting really bad [after pregnancy],” she said.
Sjögren’s Syndrome is an autoimmune disease in which the immune system attacks the body’s own exocrine (or moisture-producing) glands. Ehlers-Danlos syndrome is a group of connective tissue disorders that impact the skin, bones, blood vessels, organs, and other tissues. Mast cell activation syndrome occurs when the body releases too much of certain types of chemicals, such as histamines, in the body, resulting in repeated allergic or anaphylaxis episodes. POTS is a blood circulation disorder of the autonomic nervous system.
Halsey has previously shared details about her health struggles, including her battle with endometriosis. Back in 2017, she underwent multiple surgeries to help her with the condition.
She commented, “For those of you who have followed this battle of mine or who may suffer with it yourself, you know the extremes to which it can be mentally exhausting and physically painful.”
Halsey says she won’t let her health conditions stop her from living a full life or having a successful career, however. “If you suffer from chronic pain or a debilitating disease, please know that I have found time to live a crazy, wild, rewarding life AND balance my treatment and I hope so much in my heart that you can too,” she said.
If you suffer from autoimmune disease or other auto-inflammatory conditions, then you’re no stranger to inflammation. According to the Cleveland Clinic, inflammation is defined as the process by which your body activates your immune system to fight off bacteria, viruses, and toxins, and to heal damaged tissue. However, if your body sends out inflammatory cells when you’re not sick or injured, you may have chronic inflammation. Excessive chronic inflammation is what underlies many chronic health conditions, from rheumatoid arthritis to systemic lupus erythematosus.
While modern medicine may turn to pharmaceuticals like NSAIDs (non-steroidal anti-inflammatory drugs), steroids, or immunosuppressants, patients are increasingly turning to natural products with anti-inflammatory properties to help them prevent damaging inflammation and reduce existing inflammation. In this blog post, we explore 5 anti-inflammatory foods that can help you fight chronic inflammation.
1. Manuka Honey
Honey has long been used in traditional medicine for its healing properties. But did you know that manuka honey sourced from New Zealand has such powerful anti-inflammatory properties that it was approved for wound treatment by the FDA?
What sets manuka honey apart from other types of honey are the properties methylglyoxal (MG) and dihydroxyacetone (DHA) which give manuka honey its supreme quality and purity. These properties have been shown to have various health benefits, including protecting against gastric ulcers, inhibiting influenza viruses, soothing sore throats, and treating antibiotic-resistant infections.
Manuka honey is known to be expensive, since it’s exported almost exclusively by New Zealand in limited supply. Check the label to ensure your honey is certified manuka honey, and not a blend of honeys from various countries.
Are you surprised by number two on this list? While technically not a ‘food’, coffee beans have polyphenols and other anti-inflammatory properties and bioactive compounds like chlorogenic acids, cafestol, kahweol, and caffeine. These compounds have shown in a few studies to reduce inflammation. A 2015 study found that coffee consumption reduced 10 markers of inflammation among regular coffee drinkers. Those who saw the greatest benefit drank 3-4 cups of coffee per day.
Keep in mind that while coffee has been shown to have anti-inflammatory effects, coffee can mess with your sleep patterns, especially if you drink it late in the day or are caffeine-sensitive. And, since sleep is an important factor in your overall health and wellbeing, it’s something to consider.
The long and short of it is, you can enjoy your cup of Joe (in moderation, that is)!
Turmeric is root vegetable-derived spice with a vibrant, yellow hue. The spice is commonly used in Middle Eastern and South Asian cuisine, and has been used in traditional medicine thanks to curcumin, a bioactive compound with anti-inflammatory benefits.
In a 2006 study of patients with autoimmune ulcerative colitis (UC), patients who took 2 grams of curcumin a day, along with prescription disease-modifying anti-rheumatic drug (DMARD), were more likely to stay in remission than patients who took the prescription medication alone. This suggests that curcumin may help to prolong remission periods for patients with chronic inflammation.
Other research studies on the health benefits of turmeric have shown that curcumin improves memory, lessens pain, fights free radicals, combats depression, helps prevent cancer, and lowers one’s risk of heart disease. That’s a lot of benefits for a spice!
Turmeric and curcumin powder are extremely versatile and can be added to curries, soups, stews, meat marinades, roasted vegetables, rice, eggs, baked goods, smoothies, teas, milk, and more.
One 2014 study found that the group that followed a Mediterranean diet and consumed an extra 50mL per day of extra virgin olive oil (EVOO) significantly decreased their inflammatory markers over the course of 12 months. This is likely because olive oil contains an antioxidant called oleocanthal, which has been recognized as a naturally occurring non-steroidal anti-inflammatory drug (NSAID), similar to manmade ibuprofen.
Researchers Lisa Parkinson and Russell Keast concluded: “It is plausible that low, chronic doses of a naturally occurring NSAID such as oleocanthal may attenuate inflammation over time, and may then contribute to significant reductions in the development of chronic inflammatory disease.”
Green tea has long been enjoyed in Eastern traditions for its earthy flavor since the Tang dynasty in 618-907 AD.
More recently, research has found that drinking green tea has been associated with a reduced risk of heart disease, cancer, Alzheimer’s, obesity, and other serious health conditions. Many of these benefits have been attributed to green tea’s antioxidant and anti-inflammatory properties, especially epigallocatechin-3-gallate, known as EGCG for short. EGCG inhibits inflammation by reducing pro-inflammatory cytokine production and damage to the fatty acids in your cells.
Plus, green tea makes a great alternative to other anti-inflammatory beverages, such as coffee, that still provides a jolt of caffeine for your morning routine.
Are you surprised by any of these top 5 anti-inflammatory foods and beverages? Which is your favorite anti-inflammatory foods out of the ones above? Let us know in the comments below!
Hey y’all – instead of the usual scholarly article, I’m doing a personal blog post about my journey with hidradenitis suppurativa (HS). As I’ve detailed in past blog posts, I’ve been living with this condition for the past 10 years, though I only got officially diagnosed with HS four years ago by my dermatologist.
Since then, I’ve tried a number of different treatments to reduce the symptoms of my Hurley Stage I hidradenitis suppurativa. While many treatments didn’t work, here’s what did (and remember, always consult your doctor before starting a new medication or treatment plan!)
1. Laser Hair Removal
Laser hair removal has been shown to ‘significantly improve’ HS symptoms in patients who participated in a 2011 study where they were treated with intense pulsed light twice a week for four weeks. The belief is that by killing the hair follicle with a laser, this auto-inflammatory condition is less likely to cause boils, abscesses and cysts in follicle-rich areas of the skin, like the underarms and groin.
There are several cons to laser hair removal to consider; the treatments are costly and are rarely covered by health insurance, since laser is not a widely-recognized treatment for HS. It’s also unlikely that someone with Hurley Stage III HS could receive laser treatments, since the laser cannot penetrate scar tissue, and it would be too painful for patients with an advanced stage of the disease.
Despite these drawbacks, I personally have seen a great improvement in my HS symptoms after attending seven sessions every six weeks over the course of one year. I would estimate that I’ve seen an 80% reduction in HS lesions on my skin at around the fourth treatment onwards with the Alexandrite laser (my clinic recommends at least nine treatments to see the best results).
2. Antibiotics
When I was first diagnosed with HS, I was having issues with recurrent, painful boils and cysts in the groin and underarm areas – classic hidradenitis symptoms. Sometimes these lesions would become infected and rupture (TMI, I know!) However, my dermatologist wasn’t a fan of antibiotics, so she didn’t prescribe them to me.
I ended up moving to a different city, and from there, started going to a new dermatology clinic. At the new clinic, I was put on a 90-day course of 100mg of doxycycline, an antibiotic, which my dermatologist explained would bring down the inflammation levels in my skin, and be more preventative in nature compared to the treatments that I had received in the past. After the first 90 days, I noticed a dramatic improvement in my HS, both in terms of the number and severity of the boils I had. Since HS is an auto-inflammatory disease, it made sense that antibiotics worked, but since very few treatments had worked previously, I was pleasantly surprised!
After those first 90 days, I was then put on a lower dosage (50 mg) of doxycycline, since patients aren’t typically given high dosage antibiotics for long-term use. I was worried that my boils would come back with the lower dosage antibiotics, but they have not returned to their previous levels as of yet.
3. Steroid Injections
Prior to going the antibiotics and laser hair removal route, I had been given steroid injections by my dermatologist whenever I had a painful and/or large abscess on my skin. The steroid gets injected directly into the boil underneath the skin, which can be pretty painful, but helped to calm down the inflammation in my skin almost immediately.
I used to get golf ball-sized cysts that had to be injected, and after they were injected, they would deflate to more of a grape-sized cyst, and the pressure against my skin felt like it was relieved. While steroid injections may not be a long-term solution, and more of a ‘reactive’ (rather than proactive) treatment, they definitely helped get me through some of my worse hidradenitis suppurativa disease flare-ups.
4. Topical Solutions
I currently use a number of creams and cleansers – all prescribed to me by my dermatologist – to help me keep the areas affected by HS as clean and exfoliated as possible. Firstly, I shower with Hibiclens, which is used by healthcare professionals to ‘scrub in’ at clinics and hospitals, and helps to keep the affected area sanitary. Although it was prescribed to me by my dermatologist, it’s also available over the counter at many pharmacies.
Secondly, I use Clindamycin, also known as benzoyl peroxide, after my shower. This is a topical antibiotic that helps to prevent infections, which is super helpful if you have HS boils that open up, exposing your skin to a potential bacterial infection.
Thirdly, I use a cream with 15% Resorcinol, which, in a 2010 study, has been shown to improve the pain and duration of HS lesions. I get my cream from a compounding pharmacy called ChemistryRX, though I have seen Resorcinol skincare products for sale online (just with less of the active ingredient in it).
Finally, I use Tretinoin, a Vitamin A derivative, which helps to get rid of all those pesky little blackheads that appear after a skin lesion has begun to heal. I know this is a lot of different skincare products for hidradenitis suppurativa, but those of you who have this skin condition will know that you have to fight this disease with everything you’ve got!
5. Zinc Supplements
I take 50mg of zinc supplements daily. While it hasn’t been definitively proven that there is a link between hidradenitis suppurativa and zinc deficiency, some initial studies have shown promise in the treatment of HS with zinc gluconate. A 2012 study in France, for example, showed that when patients with HS lesions were treated with 90mg of zinc gluconate each day over the course of 3 months, they experienced a significant alteration in the balance of inflammatory markers in their body, as compared to samples collected before the zinc treatment. This imbalance in inflammatory markers may be the underlying cause of hidradenitis suppurativa.
Although I’m not 100% sure that zinc supplementation is working to reduce my HS lesions, I decided that I didn’t have much to lose by taking a daily zinc supplement, a mineral which many of us are deficient in anyway. If you don’t want to swallow a pill to get your zinc, some natural sources of zinc include: meat, shellfish, dairy, eggs, legumes, whole grains, nuts and seeds.
That’s it for today’s blog post! What has helped you to improve your hidradenitis suppurativa (HS)? Let us know in the comments below!
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Could there be a link between the consumption of dairy products and multiple sclerosis (MS)? A new study from the University of Bonn sheds light on that question. Image courtesy of Health Europa.
A new study from the University of Bonn in Germany has revealed a link between the consumption of dairy products and multiple sclerosis (MS), reports Science Daily.
The researcher who led the study, Stefanie Kürten, a professor or neuroanatomy at the University Hospital Bonn, is considered to be an expert on MS, an autoimmune disease that often has debilitating and disabling symptoms. Kürten says it was her patients themselves that prompted her theory that there could be a link between the consumption of dairy products and MS symptoms.
“We hear again and again from sufferers that they feel worse when they consume milk, cottage cheese, or yogurt,” Kürten explained. “[So] we injected mice with different proteins from cow’s milk. We wanted to find out if there was a protein that they were responding to with symptoms of disease,” she said.
In healthy mice, the myelin sheath (black) fits snugly as a compact layer around nerve fibers. Image courtesy of Prof. Kürten/the University of Bonn.
Her team’s research had some interesting results: when they administered the cow’s milk protein casein to mice, together with an effect enhancer, the mice went on to develop neurological disorders. A microscopic look at the mice’s nerve fibers showed damage to the myelin sheath, which is the insulating layer that gets damaged by the body’s immune response in patients with MS.
Rittika Chunder, a postdoctoral fellow in Professor Kürten’s research team, explains: “We suspected that the reason [for the damage] was a misdirected immune response, similar to that seen in MS patients.” “The body’s defenses actually attack the casein, but in the process they also destroy proteins involved in the formation of myelin.”
In mice injected with casein, the structure of the myelin sheath loosens, and sometimes is missing altogether. Image courtesy of Prof. Kürten/the University of Bonn.
So why would one’s body attack the casein, the protein found in milk, to begin with? The researchers theorize that presumably, the multiple sclerosis patients studied developed an allergy to casein at some point in their lives as a result of consuming milk. Then, the immune system mistook a protein called MAG, which is important for myelin production, with casein.
“We compared casein to different molecules that are important for myelin production,” Chunder explained. “In the process, we came across a protein called MAG. It looks markedly similar to casein in some respects – so much so that antibodies to casein were also active against MAG in the lab animals.”
So, if you have MS, should you avoid milk and other dairy products altogether? Not necessarily, say the researchers, as this only affects MS patients who are allergic to cow’s milk casein.
“We are currently developing a self-test with which affected individuals can check whether they carry corresponding antibodies,” said Kürten. “At least this subgroup should refrain from consuming milk, yogurt, or cottage cheese.”
Another multiple sclerosis study out of Harvard University has pointed to the Epstein-Barr virus being the trigger for the demyelinating autoimmune disease. And, the MS Society of Canada has published vitamin D recommendations, due to the link between vitamin D deficiency and MS, demonstrating that there isn’t necessarily one catch-all cause of MS.
Still, Kürten’s research has opened an interesting conversation for further studies related to the link between diet and autoimmune disease – and many leading physicians and scientists believe that there is, in fact, a link. Dr. Terry Wahls, a physician who has MS herself, published a book called The Wahls Protocol about how she used Paleo eating principals to put her MS symptoms into remission.
For all of our readers with multiple sclerosis: what do you think about the new research about the link between dairy and MS? Do you follow a certain diet to control your MS symptoms? Let us know in the comments below!
Paige Neale is a lively 5-year-old girl living with a rare and debilitating autoimmune disease. Image courtesy of Fox News.
5-year-old Paige Neale of Maryland has an autoimmune disease so rare, scientists believe that there are only 100 people on the planet who have ever had it.
The disease is called lipopolysaccharide-responsive and beige-like anchor protein deficiency, or LRBA deficiency for short. The autoimmune disease causes Paige’s body to attack her joints and internal organs, like her stomach and lungs. Paige was diagnosed with the rare autoimmune disease when her parents noticed that she was getting sick a lot more often than her fellow peers her age, including suffering from swollen joints and various GI issues.
Commenting on his daughter’s diagnosis, Mike Neale said: “It’s such a tough diagnosis because you don’t know what to expect…what laid ahead for her, and what do we do next?”
According to the National Institute of Allergy and Infectious Diseases, the disease is caused by a genetic mutation in the LRBA gene. Patients with the condition are highly susceptible to infections, especially of the upper respiratory tract. LRBA deficiency can also cause various symptoms, including poor blood clotting, anemia, weakness, fatigue, joint pain, stiffness, and eye inflammation (uveitis). It can also make patients more susceptible to developing other autoimmune conditions, such as vitiligo, psoriasis, and type 1 diabetes, which cause additional symptoms as well.
For her part, Paige was also diagnosed with the autoimmune condition juvenile rheumatoid arthritis in addition to LRBA deficiency. To keep her alive, Paige receives bi-weekly shots that cost thousands of dollars, but a new procedure is giving Paige’s family hope for the future. Their little girl is to receive a bone marrow transplant in April from her 3-year-old sister, who happens to be a 100% match.
“Right now you look at her, and she looks like a completely healthy five-year-old girl,” said her father Mike. He continued, “We tend to forget how sick she was leading up to that, so we question ourselves: Should we be putting her through this bone marrow transplant that is going to destroy her immune system and make her really sick?”
If the procedure is successful, however, Paige will no longer need to get bi-weekly injections, and she’ll be able to go on to lead a normal life – an end result that her father says is the ultimate goal. Paige enjoys skiing and horseback riding – activities that have given her and her family a sense of normalcy during the COVID-19 pandemic, and throughout her vigorous treatment regimen.
Actor Bob Saget was an advocate for scleroderma research, raising over $25 million to find a cure. Image courtesy of the Scleroderma Foundation.
Bob Saget, the beloved Full House actor who recently passed away, battled against a little-known autoimmune disease prior to his passing. The condition was scleroderma, and it was responsible for the passing of his older sister Gay Saget at the young age of 47.
Gay was diagnosed with scleroderma at age 44, a mere three years before her passing. She had suffered from unrelenting symptoms for years before her diagnosis, however, but doctors couldn’t pinpoint the cause. Her brother Bob had commented on his sister’s diagnosis journey, saying: “She had a lot of fatigue…it felt like her skin was on fire. She went to regular medical doctors that said that it could be lupus, it could be mental illness, it could be Epstein-Barr. They named everything except what it was.”
Gay’s frustrating journey to diagnosis is no outlier in the chronic illness community. Many patients with chronic illnesses such as autoimmune diseases go years without a diagnosis, until their symptoms become severe enough to be diagnosed.
Dr. Fred Wigley, a professor of medicine at Johns Hopkins University, has studied scleroderma for the past 45 years. “[Scleroderma] can be a very terrible multi-system disease, but not in every patient,” Dr. Wigley said. With scleroderma, the body over-produces collagen, impairing the functioning of various organs. Common symptoms of the condition include tightening of the skin, finger and toe pain, arthritis, muscle weakness and trouble swallowing. It can also damage internal organs, especially the lungs.
Gay was among approximately 300,000 Americans living with the disease. About 80% of these patients are women, most commonly between the ages of 30 and 50. The disease tends to be more severe in patients of color, for unknown reasons.
Bob said that his sister was treated with steroids, like prednisone and cortisone, but that the drugs failed to relieve her symptoms, and did not get to the root cause of the disease. “She got treatment, but it was just treating her symptoms…She had to move to Los Angeles to live with my parents because she needed so much help,” he had explained.
There are multiple different types of scleroderma, with localized being the most common and more mild type. With localized scleroderma, the internal organs are rarely involved, and it primarily affects the skin. Systemic scleroderma is the less common type, affecting about 30% of patients living with the condition. This is the type that Bob Saget’s sister had, which impacts one’s connective tissues and internal organs.
Since scleroderma was a cause that was very dear to his heart, Bob Saget focused on raising funds for the Scleroderma Research Foundation, which aims to find a cure for this debilitating autoimmune disease. In total, he raised over $25 million for the foundation prior to his passing, leveraging his fame and Hollywood connections to garner donations from big-name celebrities like John Mayer, Rob Williams and Dave Chappelle.
“For me, it’s an homage to [my sister], and somehow telling her that her life had a real purpose,” Saget had said. He continued, “I have a lot to live up to. I feel like, to really do her justice, is to really make huge strides in the next decade or two and to really help these sweet, innocent victims with this disease.”
In light of Bob Saget’s passing, his family members asked friends and fans to remember him by making a donation to charities benefitting patients with scleroderma. To make a donation in Bob Saget’s memory to the Scleroderma Research Foundation, see the official in memory webpage. Donations will be matched up to $1.5 million.
US military study suggests that the Epstein-Barr virus may be a leading cause of Multiple Sclerosis (MS). Image courtesy of HealthCentral.
Multiple Sclerosis (MS), a debilitating autoimmune disease, may in fact be caused by a virus, suggests a new study published in Science by Harvard Medical School Researchers.
The researchers tested a cohort of more than 10 million young adults on active duty in the US military between 1993 and 2013. During this 20-year timeframe, 955 individuals were diagnosed with MS over the course of their period of service. The researchers found that the risk of MS increased 32-fold after infection with the Epstein-Barr virus, known as EBV for short.
MS is a chronic inflammatory demyelinating disease of the central nervous system. The chronic inflammation occurs when the immune system mistakenly attacks the protective sheath (myelin) that covers nerve fibers, causing communication problems between your brain and the rest of your body. According to the Mayo Clinic, the disease can eventually cause permanent damage or deterioration of the nerves. Other symptoms include vision problems, slurred speech, fatigue, dizziness, tingling or pain in parts of the body, and bowel, bladder, and sexual dysfunction.
Multiple Sclerosis and the Epstein-Barr Virus
Although the exact cause of multiple sclerosis is unknown, it has long been hypothesized that the demyelination in the brain and spinal course is triggered by a viral infection. This particular study found that serum levels of neurofilament light chain, a biomarker of neuroaxonal degeneration, increased only after EBV seroconversion, suggesting that EBV is a leading cause of MS. However, the risk of MS was not increased after infection with other viruses, such as the cytomegalovirus (CMV); the researchers had also compared samples to CMV positivity as a negative control group, and found that CMV positivity was actually associated with a lower risk of MS.
“The key finding is that MS is a complication of infection with EBV,” said Alberto Ascherio, a professor of epidemiology and nutrition at Harvard’s T.H. Chan School of Public Health. Commenting on the size and longevity of the study, Ascherio said: “There is no comparable population in the world.”
Stanford University researchers believe that molecular mimicry may be the culprit behind why those infected with Epstein-Barr have a higher risk of developing MS. Molecular mimicry occurs when immune cells targeting EBV accidentally attack myelin, due to the molecular similarities between the virus and this tissue. A 2018 study identified EBV-infected B cells in the brains of MS patients, lending support to the molecular mimicry theory.
Deficiency of vitamin D from the sun may also play a role in the development of MS. Image courtesy of Minnesota Oncology.
Multiple Sclerosis: Vitamin D Deficiency and Genetic Factors
It’s unlikely that EBV is the sole reason behind the development of MS, however. The study suggests that EBV seropositivity is necessary to develop MS, but it isn’t sufficient – otherwise, 95% of the world’s population would have MS, since the virus is prevalent worldwide. According to the UK-based Multiple Sclerosis Trust, an estimated 2.5 million people worldwide have multiple sclerosis. So why do only some people develop MS and not others?
Another theory about the development of MS is vitamin D deficiency. Vitamin D, also known as the sunshine vitamin, may be a protective compound against the development of MS; it has been found, for instance, that the distribution of MS around the world is uneven; generally, the prevalence of the disease increases as you travel further north or south from the equator. The parts of Asia, Africa and America that lie on the equator have extremely low levels of MS, while Canada and Scotland have particularly high rates. This suggests that vitamin D, particularly from the sun, is important in preventing MS, possibly due to its anti-inflammatory properties.
Other studies have shown that certain ethnic groups have a markedly lower prevalence of MS, despite living in places where the disease is more common. For example, the Sami or Lapps of northern Scandinavia, the Inuits of Canada and Greenland (Denmark), and the Maoris of New Zealand exhibit very low rates of MS, despite living in some of the northernmost and southernmost climates in the world.
The Inuit people of Canada and Greenland have very low rates of MS among their population, despite living in some of the northernmost regions of the world. Photo courtesy of The Paleo Diet.
Multiple Sclerosis and Diet
Another theory that has evolved is the relationship between Multiple Sclerosis and one’s diet. As noted above, many northernmost communities do not get sufficient vitamin D from the sun, due to their local climate. However, they make up for this by consuming a vitamin D-rich diet; for example, fish and marine mammals like seal and whale. These foods are also rich in healthy omega-3 fatty acids, which are also known to have anti-inflammatory properties and may help other autoimmune conditions beyond MS, like rheumatoid arthritis, Crohn’s disease, ulcerative colitis, and systemic lupus erythematosus.
Although considered controversial to some, Dr. Terry Wahls, who has multiple sclerosis herself, developed a dietary approach to treating autoimmune conditions with paleo principals, which she calls the Wahls Protocol.
New Ways to Treat MS
Ascherio, for his part, believes that his team’s groundbreaking research on the connection between viruses like Epstein-Barr and MS could pioneer the development of new multiple sclerosis treatments. For example, immunosuppressive therapies that deplete B cells infected by EBV.
There is also renewed interest in developing vaccines and antivirals against EBV with the objective of eradicating MS. While antivirals targeting EBV don’t yet exist, Ascherio says their development is realistic: “Once you establish the causal connection, I think it’s a question of providing sufficient rational for research on antivirals, specifically for EBV, that could help people with MS [around] the world,” he concluded.
Happy New Year! As many of us start putting into practice our New Year’s resolutions for 2022, I wanted to share seven products that will help you crush your health and fitness goals this year.
1. Stainless Steel Water Bottle
Stay hydrated with a high-quality, stainless steel water bottle that you can bring with you anywhere- whether that’s to the gym, work, school, going out for a hike, or a jog around the neighborhood. I love this water bottle from the Austin, Texas-based company YETI, which makes high-quality stainless steel drinkware for those with an active lifestyle.
Everyone knows the importance of sleep, and how getting adequate levels of deep sleep can make or break your health. That’s why I highly recommend using a weighted blanket if you suffer from insomnia, including both poor or disrupted sleep. A 15-lb blanket like this one below from Amazon will weigh your body down in bed, helping you to not only fall asleep quicker, but stay asleep too!
Your genetic makeup has a huge impact on your health; that’s why it’s important to learn about how your genes can contribute to the development of health issues later in life. With a genetic test kit like this one from 23andMe, you can learn about your genes, including if you have a genetic predisposition for or if you’re a carrier of any health conditions. Thanks to my 23andme results, I learned four years ago that I have two genetic variants for early macular degeneration, and since then, have been religiously taking lutein and omega-3 supplements to improve my eye health.
A solid pair of running shorts is a must-have for anyone looking to add jogging to their 2022 fitness routine. Plus, running shorts are loose and comfortable, perfect for not just jogging, but practically any kind of physical activity, from playing a round of tennis to hitting the gym. Here is a highly-rated pair of running shorts for both men and women from Under Armour.
A yoga mat is a must-have for doing mat workouts, like yoga, pilates, or even when performing certain floor exercises with free weights, or when using a workout ball or band. I’ve owned my yoga mat since I was 12, and I’m now pushing 30 – so think of your mat as a long-term investment. A thick, non-slip mat that’s lightweight can easily be carried to your yoga studio, gym, or around the house.
With the advent of working from home, at-home fitness equipment has become increasingly popular. At the beginning of the pandemic, my husband and I got a rowing machine, which is great for a simple, at-home workout, especially if you want to tone up your arms, shoulders, and upper back. I would recommend getting a water rowing machine, as the resistance it provides imitates the feel of rowing through water in real life. While pricier than other home workout equipment, a good rowing machine will last you for years to come.
Staying motivated and ‘in the zone’ is an important part of maintaining your fitness routine. That’s why, when I’m working out, I like to listen to fast-paced music or to an interesting podcast on Spotify or Pandora. According to the Scientific American, listening to music or other entertainment while exercising can distract us from pain and fatigue, elevate our mood, increase our endurance, and reduce our perceived effort, among other benefits. That’s why I would recommend getting a solid pair of earbuds, such as these airpods, to become your best fitness buddies to accompany your workouts.
So there you have it, folks – seven products to help you up your game and crush those health and fitness goals in 2022! What are your go-to companions for your workouts? Let us know in the comments below!
Emma Zaks was a 33-year-old fitness instructor when she began experiencing debilitating symptoms of a rare, undiagnosed autoimmune disease.
Emma Zaks was 33 years old and living in New York City. As a fitness instructor at SoulCycle, she taught up to 18 spin classes per week, and was in terrific shape. That’s why Zaks was taken by surprise when, in the middle of teaching a spin class, she had to leave to throw up. Unable to continue the class with the debilitating stomach pains and nausea she was experiencing, she took an ambulance from her work to the ER.
After a few tests, including a colonoscopy, an endoscopy, and CT scans, Zaks was told that she likely had an infection affecting her stomach or intestines, and was given antibiotics and discharged after a six-day stay in hospital. The antibiotics didn’t work, however, and she woke up to a terrifying sight in the mirror: her right eye was pointing sideways. She was also seeing double.
Zaks woke up to impaired vision as a result of a stroke. She didn’t know it yet, but she suffered from a rare autoimmune disease.
Zaks later learned that she had had a stroke. Doctors prescribed her steroids, and covered her right eye with an eye patch to help her see straight. She was discharged from hospital, but Zaks’ troubling symptoms continued. “I found myself back at home, sicker than I’d ever been, and without a single real explanation. For two weeks, I lived and worked with continuing pain,” she explained.
She returned to the ER a third time, and an X-ray revealed that she had a stricture – her small intestines were abnormally narrow and had twisted around themselves, preventing anything from passing through. She received laparoscopic surgery to correct the stricture, and a biopsy to explore her condition further.
While awaiting her biopsy results, Zaks had an MRI done, which revealed a small lesion in her brain that controls eye movement and direction. Both her MRI and biopsy results lead doctors to diagnose Zaks with an autoimmune disease known as Wegener’s Vasculitis, or Granulomatosis with polyangiitis. The autoimmune condition had caused her stroke and her initial gastrointestinal issues.
Zaks went from being an active fitness instructor to a ‘shell’ of her former self.
“In a matter of months I’d become a shell of myself both externally and internally,” Zaks said. Her new treatment regimen included intense steroids and Rituxan infusions. She dropped to 95 pounds, was extremely weak, and always off balance due to her compromised vision.
Doctors offered few treatment options for her wayward right eye – which at this point, had been pointed sideways for a year. One medical provider even suggested Botox as a way to paralyze her eye muscles. Thankfully, she eventually found a physician that performed strabismus surgery, sewing the eye muscle to the wall of her eye, thereby fixing her vision.
Zaks was able to return to her job as a SoulCycle fitness instructor, and is grateful for her newfound health. “Since the surgery, I have to remind myself not to take for granted the everyday activities that used to drive me to tears in frustration,” she reflected.
Something else that has caused Zaks to reflect is the medical gaslighting she went through as part of her journey to diagnosis. “Knowing what I know now, I wish I had pushed harder for more answers, but who was I to question these doctors?” she lamented. “I hate confrontation and wanted to be a ‘good patient’ who was liked. So I took the prescriptions and advice to rest and went home, hoping for the best. Needless to say, things didn’t get better.”
Zaks believes it’s important to advocate for yourself as a patient, and trust your gut instinct. “If I had just listened to the initial diagnosis and prognosis, I would still be wearing an eye patch,” she declared.
To learn more about Zaks and her battle with Granulomatosis with polyangiitis, listen to her interview on the podcast Pregnantish.
10 facts about type 1 diabetes. Image courtesy of the Nursing Times.
According to the Centers for Disease Control & Prevention (CDC), type 1 diabetes is an autoimmune disease in which the body’s own immune system destroys pancreatic beta cells that produce insulin. Without sufficient insulin, glucose levels build up in the blood and become too high, resulting in potentially life-threating symptoms. Read on to learn 10 interesting facts about type 1 diabetes.
1. T1D is less common than other forms of diabetes
Type 1 diabetes is less common than type 2 diabetes; approximately 5-10% of people living with diabetes have type 1. However, type 1 diabetes is far from a rare disease. According to Beyond Type 1, In the United States alone, 1.6 million Americans live with T1D, and an estimated 64,000 people are diagnosed with the condition each year. In fact, it is estimated that 5 million people will be diagnosed with T1D by 2050.
2. T1D is often diagnosed at a young age
Type 1 diabetes is usually diagnosed in children, teens, and young adults, but it can develop at any age. Because type 1 diabetes is caused by an autoimmune reaction, the destruction of beta cells can go on for months or even years before any symptoms appear in the patient. Type 1 diabetes can be diagnosed through a simple blood test, such as an A1C test, which measures your average blood sugar levels over the past 2-3 months. An A1C level of 6.5% or higher indicates you have diabetes.
3. There are several risk factors for T1D
Although the exact cause of type 1 diabetes is unknown, certain genes can make you more susceptible to developing T1D. Studies have shown, for example, that children with a genetic predisposition for and a family history of type 1 diabetes have more than a 1 in 5 risk for developing this autoimmune disease.
However, many people with these genes won’t go on to develop the condition even if they have a genetic predisposition. For that reason, environmental triggers, such as exposure to viruses, are also thought to play a part in the development of type 1 diabetes. Contrary to popular belief, diet and lifestyle habits do not cause type 1 diabetes.
4. Insulin is key to managing diabetes
T1D patients need to take insulin shots, or wear an insulin pump, every day to manage their blood sugar levels and get the energy their body needs. Patients with type 1 diabetes should work with their doctor to determine the most effective type of insulin and dosage that are right for them. Types of insulin range from ultra rapid-acting insulin, to rapid-acting, short-acting, intermediate-acting, long-acting, and ultra long-acting.
In addition, T1D patients also need to check their blood sugar levels regularly. By keeping their blood sugar levels close to a target determined by their physician, patients can prevent or delay further complications. Blood sugar levels can be monitored through the use of a blood glucose monitor and finger sticks, or a continuous glucose monitoring (CGM) system.
5. T1D causes a variety of symptoms
Type 1 diabetes symptoms can vary from patient to patient. According to the Mayo Clinic, some signs and symptoms of type 1 diabetes include: increased thirst, frequent urination, bed-wetting in children, extreme hunger, unintended weight loss, bacterial and fungal infections of the mouth, gum disease, irritability and mood changes, fatigue and weakness, and blurred vision.
Another common complication of type 1 diabetes is hypoglycemia, otherwise known as low blood sugar. This occurs when the patient has too much insulin, or has waited too long for a meal or snack, or simply hasn’t eaten enough food. It can also be caused by getting extra physical activity.
6. T1D can be disabling
Type 1 diabetes can result in complications affecting various bodily systems. For example, T1D can cause nerve damage, also known as neuropathy. Symptoms include tingling, numbness, burning or pain in one’s extremities. This can also cause gastrointestinal issues, like nausea, vomiting, diarrhea, or constipation. In men, erectile dysfunction can be an issue.
Foot damage may also occur, as a result of poor blood flow to or nerve damage in the feet. If not treated, cuts and blisters in the feet can turn into serious infections that may require limb amputation.
T1D may also cause kidney damage, resulting in kidney failure or irreversible end-state kidney disease, which requires dialysis or a kidney transplant.
It’s less commonly known that type 1 diabetes can also cause eye damage. The blood vessels of the retina become damaged (called diabetic retinopathy), potentially causing blindness. Diabetes also increases the risk of developing other vision conditions, like cataracts and glaucoma.
7. T1D can be life-threatening
Type 1 diabetes can in fact be life-threatening. For instance, T1D can cause cardiovascular problems like high blood pressure, coronary artery disease, chest pain (angina), atherosclerosis (narrowing of the arteries), heart attack, and stroke.
Another life-threatening complication of type 1 diabetes is diabetic ketoacidosis (DKA), a state in which your body cannot use the sugar in its bloodstream to produce energy, so it starts to break down fat as fuel. This causes ketones to be released into the body. If the level of ketones in your body becomes excessively high, this can result in a coma or even death. Some warning signs of DKA include dehydration, extreme thirst, flushed skin, nausea, stomach pain, vomiting, shortness of breath, fruity-smelling breath, and disorientation.
8. Lifestyle changes can make a difference
Although type 1 diabetes isn’t caused by poor diet or lifestyle habits, maintaining healthy lifestyle habits can go a long way to improving your overall health and wellbeing. Such habits include stress reduction, getting sufficient sleep, making healthy food choices, being physically active, and controlling your blood pressure and cholesterol levels.
Maintaining a close working relationship with your medical care team, and regularly attending your appointments, are also important in managing your type 1 diabetes. Your care team may include your primary care physician, endocrinologist, podiatrist (foot doctor), ophthalmologist and optometrist (eye doctors), dentist, pharmacist, registered dietician, and more.
9. Type 1 diabetes can develop during pregnancy
Type 1 diabetes may develop in women who are pregnant, a condition referred to as gestational diabetes. This occurs when blood sugar levels become high during pregnancy. Gestational diabetes affects up to 10% of women who are pregnant in the US each year. While gestational diabetes does go away after giving birth, it can impact your baby’s health, and raises your risk of developing type 2 diabetes later in life.
10. There is hope
If you are a type 1 diabetes patient, it’s important to get the support and resources you need to manage daily life with the condition. Here are a few resources that may help:
‘Tis the season for gift giving, and as many shoppers look for Black Friday deals this week to complete their holiday shopping, we’ve compiled a list of gift ideas for the chronic illness patient in your life.
1. Scented Heating Pad
When I first developed Sjogren’s Syndrome, I had debilitating joint pain that was only relieved by one thing: heat. I had a cheap little heating pad that I bought from a local pharmacy that I could use on my joints to ease some of my aches and pains. That cheap little heating pad broke, but fortunately, I was gifted a much nicer, lavender-scented heating pad that is perfect for not only my joints, but menstrual cramps and everyday aches and pains as well. Plus, this aromatic device can be quickly heated in your Microwave in under two minutes.
On the topic of joint pain, one of my friends from college has rheumatoid arthritis, a debilitating autoimmune condition affecting his joints. To relieve some of his joint pain, he wears compression gloves when completing everyday activities, like work or going to the gym. These compression gloves are made out of a lightweight fabric that makes everyday movement easy while still providing relief for painful, inflamed joints. Plus, we like that these gloves are fingerless at the tips, making it easy to still type, text, or grip objects.
With the dry winter air and many people working from home, a great holiday gift would be a home office humidifier. I can tell you as a Sjogren’s patient, there’s nothing worse than having to put eyedrops in up to 15 times per day! With a humidifier, however, your environment stays comfortably humid so your eyes and skin don’t get overly dried out. I like this model because it’s small enough for a home office, but large enough that it doesn’t have to be constantly refilled.
On the theme of moisture, any chronic illness patient dealing with dryness and skin sensitivity can appreciate a good skin moisturizer. Plus, with all of us constantly sanitizing our hands, they’re bound to be drier than ever. We love anything by Burt’s Bees, but we especially love this gift set of moisturizing skincare products, formulated specifically for dry, sensitive skin. Their all-natural products are made from beeswax, giving each product a delicate scent of honey.
Every chronic illness patient knows the importance of sleep and the impact quality sleep can have on one’s overall health and wellbeing. That’s why when insomnia hits, a quality weighted blanket can help. My husband purchased a 15-pound weighted blanket for me when I was having difficulty staying asleep, and it definitely did the trick! We love that this particular blanket comes in a variety of weights and mattress sizes, so you can find the one that will work best.
Thu-Thao (center) received an experimental treatment called CAR-T which put her lupus symptoms into remission.
Thu-Thao was 16 years old when she was diagnosed with systemic lupus erythematosus, a debilitating autoimmune disease that causes a myriad of symptoms, including organ damage, joint pain, fatigue, brain fog, and more. Thu-Thao’s main lupus symptoms were severe joint pain, heart palpitations, kidney issues, hair loss, and skin rashes. She faced life-threatening complications, and as a result, had to drop out of playing sports.
After being diagnosed with lupus, Thu-Thao received a number of conventional treatments over the course of four years, including the anti-malarial drug hydroxychloroquine (the generic for Plaquenil), steroids, biologics, and immunosuppressants. However, none of these treatments were effective and her joint pain and skin problems continued to worsen.
In March 2021, at 20 years of age, Thu-Thao received an experimental immunotherapy called chimeric antigen receptor T-cell, or CAR-T for short. This immunotherapy is typically used on cancer patients, specifically those experiencing aggressive forms of leukemia or lymphoma. This therapy reprograms destructive immune cells in the patient’s body, allowing them to recognize and destroy tumors.
However, B-cells (the target of the therapy) are also heavily implicated in lupus, in which they create antibodies that directly target double-stranded DNA. The researchers theorized that they could use CAR-T therapy to decrease B-cell numbers in the body, resulting in fewer circulating autoantibodies that cause lupus symptoms.
Following the therapy, Thu-Thao’s CAR-T cell numbers rapidly increased and remained circulating in her system. The B-cells and autoantibodies in her body—thought to be the cause of the autoimmune symptoms—then began to rapidly deplete as well. Just six months after the treatment, Thu-Thao is in remission from her lupus symptoms, and has returned to playing sports.
20-year-old Thu-Thao is finally experiencing relief from her debilitating lupus symptoms, four years after being diagnosed.
“I can finally breathe properly and sleep through the night, and I no longer have any water retention, and the redness in my face has disappeared. My hair is also growing much more densely,” said Thu-Thao. She is also no longer experiencing heart palpitations: her heart rate dropped from an average of 115 to 130 beats per minute to 80 beats per minute.
The scientists at Universitätsklinikum Erlangen, the German university where the CAR-T treatment was administered, are pleased to see positive preliminary results in a patient with lupus.
“We see this as a milestone in the therapy of autoimmune diseases,” the scientists commented. They are now planning a clinical study with CAR-T cells in more patients with autoimmune diseases.
To read more about this new immunotherapy and the research being done at the Universitätsklinikum Erlangen, read the full article.
The U.S. Federal Drug Administration (FDA) has approved a drug manufactured by ChemoCentryx to treat a rare group of autoimmune diseases, called anti-neutrophil cytoplasmic autoantibody-associated vasculitis, or ANCA-AAV for short. According to ANCA Vasculitis News, ANCA-AAV causes inflammation and damage to the body’s small blood vessels. This inflammation is the result of antibodies that bind to certain cells of the immune system, called neutrophils, and overly activate them.
Since small blood vessels are found throughout the body, ANCA-AAV causes a variety of symptoms, including:
Poor kidney function, leading to kidney failure
Severe respiratory problems, including shortness of breath, hoarse voice, cough with blood or mucus, and chest pain
Neurological symptoms, including tingling, burning, numbness, and weakness
Central nervous system (CNS) involvement, such as headaches, cognitive impairment, and memory deficits. In severe cases, seizures, paralysis or loss of consciousness may also result.
Ear, nose, and throat (ENT) symptoms, like sinusitis, nasal discharge, rhinitis, and tinnitus (ringing in the ears)
Eye symptoms, including eye pain, vision impairment, and vision loss
Joint pain, muscle pain, and muscle loss
Skin lesions, including rashes, sores, ulcers, bumps, and bleeding underneath the skin
Digestive problems, like vomiting, diarrhea, nausea, abdominal pain, and blood in one’s stool
And more…
Due to the numerous symptoms ANCA-AAV causes, it can often be fatal for patients; in fact, ChemoCentryx states that the first year mortality rate for patients living with the disease is between 11 and 18 percent. Current ANCA-AAV treatments on the market include steroids and immunosuppressant medications which compromise the body’s ability to fight off infections. That’s why having a new treatment on the market that works via a different mechanism may be a saving grace for many ANCA-AAV patients.
The new drug, called avacopan, will be sold by ChemoCentryx under the brand name Tavneos. It works by blocking a protein called C5a receptor that is responsible for causing numerous inflammatory diseases. The drug’s wholesale price will be an astronomical $150,000-$200,000 per patient per year. However, it could be the life-saving treatment that the 40,000 ANCA-AAV patients in the US need.
The drug is currently being tested for use on other conditions as well, including the autoimmune skin disease Hidradenitis Suppurativa (HS). The drug has already received approval for commercialization in Japan, and is expected to be approved in Europe by the end of 2021.
Martina, a 29-year-old mother-of-two from Stuttgart, Germany, describes what it was like being diagnosed with this challenging autoimmune condition:
“It began rather unspectacularly, with flu-like symptoms, fever, headaches, and joint pain. So anyone would think, ‘It’s just a normal flu.’ Then it got worse over the course of a week and I went to the hospital.”
She was eventually diagnosed with ANCA-AAV after undergoing a series of blood tests. Unfortunately, she had to give up her career as an educator in the process, since she didn’t have a strong enough immune system to be interacting with children while taking steroids and immunosuppressants to control the disease. Patients like Martina are the ones that could potentially stand to benefit from new drug therapies like avacopan.
Martina, 29, appears in an ad to raise awareness for vasculitis conditions.
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 rheumatoidarthritis, 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.”
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!
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.”
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.
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 my local pharmacy. 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 soothe 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 an over-the-counter ointment option.
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.
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.
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.
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!
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.
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.
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.
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?
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 & Marketsreport 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.
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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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!
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!
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!)
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.
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!
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 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.
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!
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.
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.
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!
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.
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.
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!
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.
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.
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.
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.
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.
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.
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.
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!
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 Grioto 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.
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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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.
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.
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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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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.
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