Dallas Cowboy Amobi Okoye recovers from NMDA receptor encephalitis

Cowboys Camp FootballDallas Cowboy defensive tackle Amobi Okoye has recovered from NMDA receptor encephalitis and is preparing for a return to the NFL this fall.  I had to read the story by The Dallas Morning News’ Rainer Sabin twice.

Okoye is the first professional athlete to have autoimmune encephalitis and the first to attempt to return to professional sports.  Blogs are already declaring it “the most improbable comeback in NFL history” and declaring him “a walking miracle” and “an inspiration to teammates.”

Okoye’s story has created tremendous interest in the sports media about this “one in a million” disease called NMDA receptor encephalitis.

So what is NMDA receptor encephalitis?

NMDA receptor encephalitis is a form of autoimmune encephalitis, a disease in which a person’s immune system attacks their brain.  The NMDA antibody (that causes the disease) is the most common of about 15 different antibodies that have been discovered to cause various forms of autoimmune encephalitis (AE).  Research continues to discover new antibodies. And about 40% of patients with AE have no known antibody – they haven’t been discovered yet.

Autoimmune encephalitis attacks men and women ages 8 months to 80 years, though women are more commonly affected.

The symptoms can be wide-ranging, from seizures and other neurologic conditions to hallucinations, paranoia and other psychiatric conditions.   Research is beginning to connect autoimmune encephalitis to other more commonly recognized diseases including autistic regression and dementia.

Autoimmune encephalitis is more common than previously thought.  While the incident rate of AE hasn’t been confirmed, due in part to increasing awareness and improved diagnosis, leading experts suggest it may affect as many as 1 in 50,000 people to 1 in 100,000 people.

Telling Stories, Raising Awareness

Susannah Cahalan speaking at Grand RoundsWe are appreciative to Amido Okoye for telling his story.  Like Susannah Cahalan, author of Brain on Fire, he has a powerful story to share.  Susannah’s book gave a name to a disease for many families around the world.  Her story provided hope to countless patients facing the long road to recovery.

Not every story has a happy ending. Our daughter Florence died at six-years old from this disease.  Other patients struggle daily to regain lost functions – speech, memory, motor skills.  Both Okoye and Cahalan were diagnosed quickly and treated aggressively.  These are the two critical elements of good care and full recovery.

Sharing stories raises awareness, speeds diagnosis, improves recovery and brings hope.  These are the reasons we began the Autoimmune Encephalitis Alliance, a non-profit dedicated to connecting people and resources so no one faces autoimmune encephalitis alone.

Thank you Amido Okoye for telling your story.  We look forward to watching you on Sundays this fall as you return to football.

UPDATE (8/26/2014):

Okoye was placed on the “reserve/non-football injury list” today.  He will miss the first six games of the season but by placing him on the injured list, the team indicates they still hope he will join the team by midseason.