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Brain On Fire: Wash U. Alum Describes Encounter With Rare Autoimmune Disease

Julie Stapen

In 2009, Susannah Cahalan, a graduate of Washington University in St. Louis, was a healthy 24-year old journalist at the New York Post.

One day that year, she found herself alone in a hospital room, strapped to her bed and unable to speak.

Cahalan had no memory, at the time, of her month long hospital stay, hallucinations and violent actions.

“(The doctors) became convinced I had bi-polar disorder,” she told host Don Marsh.

Bi-polar disorder was the wrong diagnosis and it wasn’t until she was seen by prominent neurologist Dr. Souhel Najjar that she was correctly diagnosed with a rare autoimmune disease called anti-NMDA receptor encephalitis, a condition which can attack the brain.

The test was simple. Dr. Najjar instructed Cahalan to draw a clock on a piece of paper.  She drew the numbers 1 to 12 on the right-hand side of the circle, indicating that the right side of her brain, which is responsible for left field vision, was likely inflamed.

“The doctor took my parents out of the hospital room and told them my brain was on fire,” Cahalan said.

Also joining Marsh was psychiatrist Dr. Eugene Rubin, Professor and Vice-Chair for Education in the Department of Psychiatry of Washington University’s School of Medicine.

“Increasingly, we’re finding certain illnesses, like Susannah’s – we find that these disorders change the brain at the molecular level. (Cahalan’s) disorder is helping us understand that psychiatry and neurology are coming together in trying to understand what leads to very unusual behaviors,” Rubin said.

Susannah Cahalan documents her story in a new book, “Brain on Fire: My Month of Madness.”  Earlier this week Cahalan and Rubin joined others for a reading and discussion at Washington University.

Related Event

Susan Cahalan Discussion and Signing
Wednesday, February 20, 2013
7:00 p.m.
Left Bank Books, 399 N. Euclid

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Alex is the executive producer of "St. Louis on the Air" at St. Louis Public Radio.
Mary Edwards came to St. Louis Public Radio in 1974, just after finishing her Bachelor of Music degree at the University of Missouri-St. Louis. She has served the station in a number of capacities over the years. From 1988-2014 she also taught an undergraduate class in radio production at Webster University. Mary was inducted into the St. Louis Media History Foundation Media Hall of Fame in April, 2017 and received the Gateway Media Literacy Partners' Charles Klotzer Media Literacy Award in 2012. Mary retired from St. Louis Public Radio in 2018, but still serves the station as a St. Louis Symphony Producer.
Don Marsh served as host of St. Louis Public Radio’s “St. Louis on the Air" from 2005 to 2019, bringing discussions of significant topics to listeners' ears at noon Monday through Friday. Don has been an active journalist for 58 years in print, radio and television. He has won 12 Regional Emmy Awards for writing, reporting, and producing. He is the recipient of a Lifetime Achievement Award from the National Academy of Television Arts and Sciences, was inducted into the St. Louis Media Hall of Fame in 2013, and named “Media Person of the Year” by the St. Louis Press Club in 2015. He has published three books: his most recent, “Coming of Age, Liver Spots and All: A Humorous Look at the Wonders of Getting Old,” “Flash Frames: Journey of a Journeyman Journalist” and “How to be Rude (Politely).” He holds an honorary Doctor of Arts and Letters degree from the University of Missouri-St. Louis.
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