The “Brain on Fire” Disease: Amber Barrett’s Rare Autoimmune Encephalitis Journey

Amber Barrett, a 30-year-old from Sydney, Nova Scotia, experienced a rare autoimmune disease called anti-NMDA receptor encephalitis in March 2021. This disease is commonly known as the “brain on fire” disease and presents symptoms similar to mental health disorders like schizophrenia and depression. Barrett experienced memory loss, speech difficulty, chaotic body movements, and seizures. She spent weeks in the hospital without much memory of the events that happened. However, her condition eventually led to the discovery of a tumor on both of her ovaries, resulting in their removal, inhibiting her ability to have children. Barrett underwent treatment and recovery in 2021, and by September 2022, she made a full recovery, able to ride her horse and return to work. While the disease is rare and often misdiagnosed, there have been recent developments in treatment and research with a new drug currently in clinical trials and a new lab for autoimmune encephalitis panel testing established in Ontario. Recovery from this illness can be prolonged and requires individualized treatment, often starting with a high dose of intravenous steroid.