A drawing of a clock is how doctors figured out what was going on. Susannah put all the numbers on one side, a clear indication there was a neurological — not a psychological — issue.
“Nobody knew about the condition,” said Dr. Josep Dalmau, a neurologist with the University of Pennsylvania. He first discovered the disease there in 2007.
The rare brain inflammation strikes mainly young women. No one knows why.
“A frequent mistake is to think that the patient has a primary psychiatric disorder. There are many patients that I still think that they are misdiagnosed,” said Dr. Dalmau.
Susannah and Emily were both eventually correctly diagnosed at Penn. Researchers there developed both a spinal fluid test to diagnose the disease, and an immunotherapy to treat it. That can take weeks even months.
Susannah, who’s completely recovered, is back and reunited with her dog in New Jersey. She just published a book about her journey called, Brain On Fire: My Month of Madness.
“You know, thousands of people have now been diagnosed, so it’s a rare condition, but it’s not exceedingly rare. It’s not as rare as initially thought,” said Susannah.
Emily and her parents now want to warn others about the mysterious disease.
“There could be people in comas right now or people stuck in psych wards that have this disease and aren’t being treated properly,” said Emily.
At this point, there is no cure. Emily and Susannah could relapse, which would require a new round of treatments.
Penn recently released a new study about the disease.
For more on Penn Medicine, visit: www.pennmedicine.org
For more on Susannah Cahalan, visit: www.susannahcahalan.com