Mysterious "Brain on Fire" Disease in Young Women Often Misdiagnosed as Psychological Condition

By Christine Hsu | Update Date: Feb 11, 2013 11:52 AM EST

Experts are warning that a newly discovered brain disease that infects mostly young women and looks a lot like psychosis may actually be behind some misdiagnosed psychological disorders.

Doctors said that women affected by anti-NMDA receptor encephalitis, an auto-immune disease first discovered in 2007 that happens when antibodies turn on the brain and cause it to swell, appeared "possessed", being dazed or laughing and crying hysterically one moment and then turning cataonic the next.

Susannah Cahalan, who was diagnosed with the disease in 2009, told CBS News that she experienced "bizarre abnormal movements" and that her arms would stick out in front of her.

"I was a relatively normal person, then the next minute I'm hallucinating and insisting that my father had kidnapped me," said Cahalan, according to CBS Philadelphia.

Doctors finally figured out that the women weren't suffering from psychological problems, but were instead suffering from Anti-NMDA Receptor Encephalitis.

Cahalan told the news station that one doctor explained the disease to her parents by saying that Cahalan's brain was on fire.

"He told them her brain is on fire. He used those words: 'Her brain is on fire,'" Cahalan said.

A relatively recent study published in the Innovations in Clinical Neuroscience revealed that anti-NMDA receptor encephalitis is deadly in a 25 percent of the cases.  Furthermore, neurological problems persist in 75 percent of the patients and relapse occurs about one in every five patients.

While a spinal fluid test can be used to detect the disease and immunotherapy can treat it, there is no cure for anti-NMDA receptor encephalitis and all patients are likely to suffer relapse.

Dr. Souhel Najjar, an expert on anti-NMDA receptor encephalitis and an associate professor of neurology at NYU medical center, told The Guardian that thousands of people have been diagnosed with the mysterious brain disease.  However, because the disease was only discovered six years ago and presents itself like other conditions, Najjar believes that about 90 percent of patients who suffered from anti-NMDA receptor encephalitis in 2009 went undiagnosed.

A former patient, Emily Gavigan, who suffered the disease when she was a sophomore at the University of Scranton, is trying to spread the word, saying that "there could be people in comas right now or people stuck in psych wards that have this disease and aren't being treated properly," according to CBS News.

While the disease normally only strikes women, there are some cases of men being affected by the disease.  For instance a 12-year-old boy from Newcastle, Australia was diagnosed with the disease.  According to the Newcastle Herald, within one month of being diagnosed with the condition, Maddy Coffey had lost the ability to speak or move and was in a "state of extreme psychosis." However, after spending 64 days in hospital under intensive care, Coffey was finally able to stand up for the first time on Jan.13, according to the Australian newspaper.

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