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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

1. Decrease Inflammation

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

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

2. Prevent Weight Gain & Hormone Imbalances

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

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

3. Strengthen Immune Memory

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

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

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

How Much is Enough?

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

Sleep Problems and Chronic Illness

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

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

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

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

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

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

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

1. Moisturize Daily with Skin Cream

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

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

CeraVe Moisturizing Cream

Aveeno Eczema Therapy Cream

2. Use A Petroleum Jelly-Based Ointment

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

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

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

Walgreens Hydrocortisone Ointment, USP 1%

3. Slap on Some Sunscreen

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

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

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

COOLA Organic Classic Face Sunscreen

4. Don’t Forget Your Lips

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

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

Burt’s Bees Ultra Conditioning Lip Balm

EOS Organic Shea Lip Balm – Strawberry Sorbet

5. Humidify Your Environment

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

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

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

Crane Drop Ultrasonic Humidifier

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