When a 48-year-old man in California experienced flu-like symptoms, little did he suspect that it would be a sign of a rare and deadly disease. Within hours of driving himself to the hospital, his condition took a terrifying turn with hallucinations and seizures, leaving him in a coma for weeks.
Two weeks later, Ryan Alto was diagnosed with Anti-NMDA Encephalitis, also known as “Brain on Fire” disease, an auto-immune condition where the body attacks the brain. Even after recovering from the coma after 8 weeks, he still faces a challenging journey, unable to walk or recognize the world around him.
“His brain is recovering, but it’s a long and grueling process. He can’t walk, stand, or even lift his arms. His mind is in a fragile state, often confused and disoriented. At times, he doesn’t recognize friends and family, and the simplest things—like a stuffed dog—seem real to him,” Alto’s family wrote on a GoFundMe page for raising funds for his rehabilitation and recovery.
Anti-NMDA Encephalitis is a relatively newly identified disease, affecting around 1.5 cases per million people. It often begins with flu-like symptoms such as low-grade fever, headache, and fatigue. However, it quickly progresses to behavioral changes and psychiatric symptoms, including anxiety, panic attacks, agitation, hallucinations, and delusions, making it easy to confuse with other psychiatric disorders. Patients may also develop memory issues, seizures, and have abnormal movements, or coma.
Although the condition can affect people of all ages, the highest rates are seen in children and young adults. Studies show that women are more frequently affected than men.
Treatment typically involves the use of corticosteroids, psychiatric medications, and epilepsy drugs. In some cases, the disease is triggered by tumors, such as ovarian teratomas in women or testicular teratoma in men, and the treatment in such cases involves the removal of tumors, followed by immunotherapy. Another identified trigger for Anti-NMDA Encephalitis is the herpes simplex virus, which can cause a new or reactivated infection that affects the brain, leading to swelling.
Alto’s family believes that with the right care and therapy, his recovery could take anywhere from six months to a year—or even longer.
