Health Spotlight: The mysterious ‘brain-on-fire’ disease

INDIANAPOLIS (WISH) — Rare and often mishandled, the mysterious Anti-NMDA-Receptor encephalitis, or brain-on-fire disease, can occur in an instant. It can cause hallucinations, seizures, memory loss, and disrupt communication.

Katie Miller suffers from the disease, and it has impaired every facet of her life. Once adventurous and active, she would often be found hunting, mountain biking, or horseback riding – until she couldn’t.

Miller says she stopped feeling like herself altogether. “Katie said, ‘Mom, I feel like my brain snapped,’” Miller’s mother said.

As brain-on-fire disease is often misdiagnosed as a psychological disorder in 40% of patients, Miller was admitted to a psychiatric ward. But the problems Miller experienced were physical, not mental.

The disease caused the development of ovarian teratoma, a cyst that can develop materials like hair, teeth, or bone. As the body recognizes the cysts as foreign, the immune system attacks them, though the cysts also contain another material – brain matter.

Within four days of being in the hospital, Miller was catatonic and on a ventilator. Doctors were able to remove Miller’s cyst, and unfortunately, Miller is unable to remember the three previous months of her life.

While there is no single approved treatment, a five-year, nationwide clinical trial is testing a drug called Inebilizumab, which was developed to stop the immune system’s attack on the brain. With various medications, Miller is on her way to recovery.

Up to 50% of patients can suffer long-term consequences, especially cognitive and mood symptoms. Recovery is a slow process, taking months to years, and patients often require prolonged hospital stays.