Myositis

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

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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.

Rare Autoimmune Disease Claims Australian Woman’s Life

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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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