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.”
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