Brain on fire disease explained

Maybe you’ve heard the term “brain on fire” as it relates to a health issue or even seen the film by the same name. But what is it exactly?

“Brain on fire actually refers to a disease that’s named anti-NMDA receptor encephalitis,” explains Victor Zach, MD, a neurologist, vascular neurology specialist and an independent member of the HonorHealth Medical Staff. “It’s a neurological and autoimmune disease where the body creates antibodies against the NMDA receptors in the brain. This leads to the disruption of normal brain signaling and causes swelling in the brain, which is also known as encephalitis.”

What are the symptoms?

This disease causes a wide range of symptoms that can vary in severity. Typically, a patient will start with less severe signs with a rapid progression to a place requiring hospitalization. Symptoms include:

  • Behavior changes such as paranoia or hallucinations
  • Memory deficit
  • Speech dysfunction (affecting the person’s ability to produce sounds and create words, or mutism)
  • Seizures
  • Impact to motions with the arms or legs or abnormal movements with the face or mouth
  • Loss of consciousness, dizziness or fainting

 

Even though anti-NMDA receptor encephalitis is rare, affecting approximately 1.5 per million persons annually, it’s important not to ignore the symptoms.

HonorHealth treats someone with Brain on Fire disease

One patient’s story

Megan D., an HonorHealth patient, and her family understand the terrifying impact of this disease all too well.

“She’s in her early 30s, healthy, eats great and is active,” says her mother, Jean. “Then one day, she can’t think; she can’t talk. She starts seeing visions. She’s fluent in French and can’t remember French.”

While suffering from constant seizures, memory loss and respiratory failure, Megan was admitted to HonorHealth John C. Lincoln Medical Center. After being put in a medically-induced coma and a week and a half into her hospital stay, doctors diagnosed her with the very rare “brain on fire” disease.

Dedicated care team

Megan was hospitalized for more than two months and her care team, including Dr. Zach, continued to provide her with the highest quality of care and wouldn’t give up on her.

“She came close to death multiple times,” shares Dr. Zach. “Each time, we told that Grim Reaper to buzz off.”

After Megan’s stay at the hospital, she had to endure several weeks of therapy. “When I woke up, I realized I didn’t know how to do anything, and that was the scariest part for me,” explains Megan. She had to re-learn daily tasks such as how to walk, talk, count and tell time.

The doctors who treated Megan suspect she may have contracted a virus that caused her immune system to start attacking her brain. It’s been quite a scary journey, but she is expected to make a full recovery.

“I would not be where I am without the HonorHealth team,” says Megan.

Need to see a neurologist?

If you’re concerned about a potential neurological issue, our expert team can help. We offer access to the best neurologists, neurosurgeons and therapists. They are all dedicated to providing you with the highest quality of care while working with you to get you the answers you need to feel better.

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