Breaking the Silence: Invisible Illnesses, pt. 1

By Nicole Beaver

Her brain was on fire.

That’s how Dr. Souhel Najjar described Susannah Cahalan’s disease, which had affected her livelihood and stumped doctors for a month. She had been misdiagnosed to various degrees. Some claimed she was “partying too much.” Others suggested the mental illness of schizophrenia. It was only due to a test used on patients with Alzheimer’s that Dr. Najjar was able to correctly diagnose Cahalan with anti-NMDA receptor encephalitis. This very long, complicated disease had only been discovered a few years prior (Cahalan was diagnosed in 2013), but thankfully, in Cahalan’s case, treatment was available, and soon, she was back to her normal self. Her experiences gave way to a bestselling book and a new wave of diagnosis, raising the number of cases mistaken for mental illness from a few to a few thousand. Today, it is commonly diagnosed and easily treatable, all thanks to Cahalan’s story.

Anti-NMDA receptor encephalitis is one of eighty known autoimmune diseases out there. This one, in particular, has autoantibodies target NMDA receptors in the brain. In turn, this causes a fever early on and then steadily spirals downwards into psychosis symptoms as the brain becomes inflamed. That is the simplest way to explain this one autoimmune disease.

So, what is an autoimmune disease? Simply put, it’s a condition arising from an abnormal immune response to a normal body part. Nearly any body part can be affected. Common symptoms include a low-grade fever and feeling tired, with symptoms coming and going recurrently. They often start during adulthood. While the numbers are often calculated for the United States, when the Dermatology Association of Canada did a survey, 50,000 people were found to have Lupus (a type of autoimmune disease that is defined by a red rash known as a “butterfly” rash that extends across the upper cheeks and bridge of the nose). Over 80% of people diagnosed with Lupus are women in the prime years of their lives, between the ages of 15 and 45 years. A common trait is that women are, statistically, more affected than men. Some other common diseases that are generally classified as autoimmune include celiac disease, diabetes mellitus type 1, Graves’ disease, inflammatory bowel disease, multiple sclerosis, psoriasis, and rheumatoid arthritis. A diagnosis can often be difficult to curate based on gender, age, and ability being used as a biased outlook in doctors.

A few well-known people suffer from autoimmune diseases, such as Michael J. Fox, an actor with Multiple Sclerosis, and Buzzfeed’s Try-Guy Zach Kornfeld, who deals with Ankylosing Spondylitis (AS), a type of arthritis in which there is long term inflammation of the joints of the spine. Invisible illnesses have long since plagued humanity, but it was believed that the immune system of a person could not attack the body itself–that is, until the first autoimmune diseases were described in 1904. This theory was challenged by the discovery of a substance in the serum of patients with paroxysmal cold hemoglobinuria (an autoimmune disease that causes anemia) that reacted with red blood cells. It later only appeared in medical history as early as 1957. The first estimate of US prevalence for autoimmune diseases as a group was published in 1997 by Dr. Jacobson. In our present day, it is treatable with Nonsteroidal anti-inflammatory drugs (NSAIDs) and immunosuppressants are often used. Intravenous immunoglobulin may also occasionally be used. While treatment usually improves symptoms, they do not typically cure the disease.

When speaking of his disease in his video “I’m getting worse (autoimmune update),” Try Guy Zach Kornfeld described how his illness affects him daily. Eight months prior to the video, he was diagnosed with his disease AS. He had been dealing with it for ten years, causing him “a great deal of pain” which “[kept him] from sleeping at night.” The lack of sleep obviously affects his daily life, with symptoms getting worse when he is immobile. The video is a good account of someone who deals with an invisible chronic illness, but he isn’t the only one.

In my next article, I will be going over the stigma and harassment those with invisible illnesses often go through.

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