Most people are faced with at least one medical scare in their lifetime, but few have dealt with a medical mystery on par with the one experienced by the star of today’s story. In 2009, a budding young reporter by the name of Susannah Cahalan was living in New York City, beginning a job at The New York Post. It was an exciting time in this 24-year-old’s life; she had just entered her first serious relationship and work life was on the up and up–but all was put on hold when she suddenly fell ill.
Now, it’s not unusual for some young people to experience traumatic illnesses, but what makes Cahalan’s story particularly distinctive is the fact that, for a period of time, hers was a full-blown medical mystery.
The young reporter first knew something was awry when she began finding small marks on her body. Thinking that her apartment may be infested with bedbugs, Cahalan called an exterminator, who, after performing an inspection, told her that there were no bedbugs to be found.
Later, Cahalan’s symptoms evolved from mysterious marks to something much scarier; she was exhausted, couldn’t control her emotions or her movements, was having seizures, and eventually, experienced episodes in which she lost her lucidity. In an interview for The Guardian, the reporter remembers how her odds symptoms manifested themselves.
“My tongue twisted when I spoke; I drooled and, when I was tired, let my tongue hang out of the side of my mouth like an overheated dog,” Cahalan recalled.
The young woman sought out the best medical assistance money could buy. At first, her episodes were blamed on a psychiatric disorder, but her affluent family continued to seek out second opinions.
Eventually, things got so bad that she was hospitalized while experts struggled to pin down a diagnosis. In that time period, her symptoms got even worse; she experienced intense hallucinations, personality disorder, psychosis, and catatonia, the very movement and behaviors that serve as hallmarks for schizophrenia.
After being admitted to the prestigious NYU Hospital, a team of neurologists took on her case, and after a full month of testing, Cahalan was eventually diagnosed with anti-NMDA receptor autoimmune encephalitis. Oddly, this came after a neurologist asked her to draw a picture of a clock; when she arranged all of the numbers on the right side, the expert realized that part of her brain was swollen, a tell which led to proper testing and diagnosis.
What’s particularly notable about this case is that anti-NMDA receptor autoimmune encephalitis had been recognized as a medical condition just two years prior to Cahalan’s diagnosis. In fact, the young reporter was only the 217th person in the world to receive the diagnosis.
While it’s a complicated condition that experts are still learning much about, it’s certain that if Cahalan didn’t get the treatment that she needed, her future would have been bleak.
“There’s never been a natural history of the disease because it was only discovered in 2007, but I think it’s safe to say that I would probably have ended up in a psychiatric ward,” Cahalan reveals. “They were leaning toward that anyway. Or, a nursing home. Or, I could have died.”
Very scary stuff–but, we are happy to report that, these days, Cahalan is thriving. In 2013, she published a best-selling novel called Brain on Fire, a memoir that her investigative reporting training helped her write since she was not lucid for much of her 2009 illness.
Since the book’s release, she has been an active member of the encephalitis community, speaking at events worldwide. And, last summer, Netflix even produced a film based on the book, starring Chloe Grace Moretz.
Talk about turning a horrific situation into a positive one! We’re so happy to hear that Susannah Cahalan survived the ordeal and continues to advocate for others suffering from the illness. To meet Cahalan and learn more about this story, be sure to watch the video below.
We’d love to hear your thoughts on this story. Have or read her book or seen the movie? If so, what parts of Cahalan’s story most surprised you? Have you ever endured a medical crisis?