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Brain on Fire: An Interview With Susannah Cahalan on Anti–NMDA Receptor Autoimmune Encephalitis: Page 2 of 2

Brain on Fire: An Interview With Susannah Cahalan on Anti–NMDA Receptor Autoimmune Encephalitis: Page 2 of 2

SC: It’s amazingly ingenious, as well as old-fashioned. The Clock Test is ordinarily given to people with dementia or Alzheimer disease. It had no business being given to a 24-year-old . . . but my doctor, Souhel Najjar, had a brilliant stroke of insight and decided to use it to test me.

He first asked me to draw a circle—and I did after one aborted attempt. (I later learned that circle drawing is an overlearned practice that many people—even those with severe cognitive deficits—can do.) Then he asked me to write in the numbers. When he stared at the page, he nearly applauded. I had squished in all the numbers—1 through 12—on the right-hand side, entirely neglecting the left side of space. This proved to him that whatever I was suffering from was neurological—not psychiatric. It was the key that finally led to my final diagnosis.

HF: When was your condition—anti–NMDA receptor autoimmune encephalitis—discovered and what was the course of treatment that has allowed you to regain so much of what was lost for much of 2009 during your acute illness and during your recovery?

SC: Anti–NMDA receptor autoimmune encephalitis was first discovered in 2007 by Dr Josep Dalmau at the University of Pennsylvania. This is not a chronic illness for many—although some have long-term disabilities and some die even with proper intervention.

But for me, it took only a relatively simple combination of steroids and immune therapies (IVIG treatment and plasmapheresis) to get back to who I am now. The recovery was a protracted, emotionally painful process, but a necessary one.

HF: Everyone who reads Brain on Fire is going to experience an exceedingly well-written piece of medical journalism that is only made better by your being the reporter and the subject. In addition to simply being on the lookout for rare but thankfully treatable conditions with psychiatric presentations, do you think there are any special lessons for psychiatrists who read your book?

SC: This is a great question. Obviously, the implications of this disease and others like it (there are many other types of autoimmune encephalitis that have been consequently discovered) are that neurological diseases can cause behaviors that are nearly indistinguishable from psychiatric diseases. I think greater vigilance on the part of psychiatrists about ruling out neurological causes is exceedingly important.

Another, less obvious outcome is that early on in my treatment, when I was thought to be suffering from a psychiatric disorder, my care was less sympathetic than it was later, when I was diagnosed with a neurological disease. Why is this? And how can we remove this stigma attached to mental illness? At the height of my disease, nothing distinguished me from a person with schizoaffective disorder or schizophrenia—the only difference came later: when I was cured. I don’t know how we change the systematic treatment of mental illness in this country, but clearly it needs to be rethought.

For more information about Brain on Fire, please click here.


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