TODAY: One woman’s tale of ‘madness’ saves another from rare auto-immune disease

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Doctors told Bill Gavigan his daughter Emily’s sudden paranoia was likely schizophrenia, but after seeing Susannah Cahalan on TODAY describing the same symptoms, he demanded Emily be tested for the her rare disease. Bill, Emily, and Susannah talk about the frightening illness outlined in Susannah’s new book, “Brain on Fire.’

By Lisa Flam

If Susannah Cahalan hadn’t told her story of being stricken with a rare autoimmune disease that looked like psychosis, Emily Gavigan might not be here today.

It was January 2009, when Gavigan, a happy-go-lucky 19-year-old college sophomore on the dean’s list, started to act strangely, speaking rapidly and growing increasingly paranoid. She checked herself into a psychiatric hospital, where doctors thought she might be suffering from schizophrenia.

“I thought that trucks were following me and people were out to get me,” Gavigan told TODAY.

After doctors told her family she would be unlikely to be able to return to school or hold a job, her aunt called her father to tell him that she saw Cahalan discussing her illness on the TODAY show that morning.

“She has this terrible disease that sounds exactly what Emily has been going through,” Emily Gavigan’s father, Bill Gavigan, recalled his sister telling him over the phone.

Read an excerpt of Cahalan’s book, “Brain on Fire”

Cahalan was a young New York Post newspaper reporter when she began suffering from paranoia and hallucinations, ultimately ending up in a catatonic state. Thanks to one doctor’s sleuthing and persistence, she was ultimately diagnosed with anti-NMDAR encephalitis, a disease in which the immune system attacks the brain. Cahalan recovered, and shared her story by appearing on the TODAY show in 2010 with the hope of helping others.

And she has done just that, as Emily Gavigan now credits Cahalan with saving her life.

“I’m just so thankful for her,” Emily Gavigan said on TODAY Wednesday. “If she hadn’t been here, than I probably wouldn’t be here.”

As Emily Gavigan languished in the hospital in 2010, her parents brought up Cahalan’s diagnosis with her doctors, but they didn’t see a connection, Bill Gavigan told TODAY. She was in critical condition. She couldn’t walk or talk and had developed a blood clot in her brain, her father recalled.

He remembered Cahalan’s story and begged the doctors to test his daughter for the same disease. “I said ‘Would you please test her for this,’” an emotional Bill Gavigan recalled on TODAY.

About hour later, after getting a positive result, Emily Gavigan was flown by helicopter to be treated by the same doctor who saved Cahalan’s life.

Sitting on either side of Bill Gavigan Wednesday morning on TODAY, the two women talked about what they now mean to each other.

Emily Gavigan has recovered and is now back in college, due to graduate next month. “I’m just 100 percent better,” she said. And she expressed gratitude to Cahalan.

“The way we can relate about what we’ve gone through too is really important to me,” Emily Gavigan said.

Cahalan, who wrote about her devastating illness in a new memoir titled, “Brain on Fire: My Month of Madness,” said she was open about her illness to help other people.

“She’s sitting here right now,” Cahalan said of Emily Gavigan. “I touched her life, in a way, and she’s touched mine. And that’s the reason you do something like this.”

Looking back at the time she was ill and seeing the photographs of herself in the hospital, Emily Gavigan said she sees somebody else.

“I look like a completely different person,” she said. “I feel like I’m watching someone else. I do remember some of it but most of it is just completely gone.”

The recovery wasn’t easy, her father noted, and he too, is thankful for Cahalan.

“It took a little bit of time for us to convince the doctors, but it’s thanks to Susannah that Emily sits here right now,” he said.

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