YOUR HEALTH: Brain on fire: Surviving a rare and mysterious disease

Here’s the journey of one young woman who experienced brain on fire disease.
Published: Jul. 26, 2023 at 7:53 AM CDT
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SALT LAKE CITY, Utah. (Ivanhoe Newswire) - Imagine being totally fine one day, then the next, you’re having hallucinations, seizures, memory loss, and even trouble talking. It’s called brain on fire disease. Here’s the journey of one young woman who experienced this rare and mysterious illness.

Hunting, mountain biking, horseback riding — you name it, Katie Miller would do it, until she couldn’t.

“I just didn’t feel like myself, like normal,” she said.

“Katie said, ‘Mom, I feel like my brain snapped’,” her mom Colleen fearfully remembered.

Local doctors admitted Katie into a psychiatric ward, but what was happening to her wasn’t mental, it was physical.

“What happens is you’re perfectly normal one day, and suddenly overnight, this person can become paranoid, can start having visual hallucinations, auditory hallucinations,” explained Dr. Stacy Clardy, an autoimmune neurologist at the University of Utah.

Anti-NMDA receptor encephalitis — also known as brain on fire disease — is misdiagnosed as a psychiatric disorder in up to 40 percent of patients.

“So, for many of the females, especially after puberty, they can develop what’s called an ovarian dermoid cyst or an ovarian teratoma,” Dr. Clardy added.

These cysts often have hair and teeth in them. The immune system sees it as foreign and attacks it, but there is a component of tissue that actually is brain tissue.

Within four days, Katie was catatonic and needed a ventilator to breathe. There is no single approved treatment. That’s why a five-year, nationwide clinical trial is testing whether a drug called Inebilizumab will stop the assault on the brain.

Katie had her cyst removed, but she can’t remember three months of her life. And now, and with various medications, Katie is on her way to recovery.

Up to 50 percent of patients can suffer long-term consequences, especially cognitive and mood symptoms. Recovery is also often slow — over months to years — and patients require prolonged hospital stays. The extinguished trial is enrolling at 26 sites all across the United States, and in Barcelona and the Netherlands. If you think you may have heard of this disease, it may be because the book “Brain on Fire” was written by journalist Susanna Cahalan who had NMDA receptor encephalitis. It was made into a movie in 2016.

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