My AE Journey
We are all survivors of autoimmune encephalitis. Patients, families, friends, caretakers, doctors, nurses, rehabilitation specialists, we have all endured the worst this disease can throw at us. And we are surviving. This weekend I had the chance to meet four amazing survivors. Each has their own story to tell. They shared the same stage: a six-year-old […]
Dallas 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. […]
Susannah Cahalan and Dr. Souhel Najjar NY Times best selling author and AE survivor Susannah Cahalan reads from Brain on Fire and has a conversation with the doctor who saved her life, Dr. Souhel Najjar. The Autoimmune Encephalitis Alliance hosted a series of Autoimmune Encephalitis awareness events at Duke University Medical Center, March 26 and 27, 2014. International experts […]
I am in awe of writers… their ability to choose the exact word to bring the emotion or feeling directly to the reader. I am there. I am her. I feel this about Sandra because she is a mom warrior. And not only that, but a mom warrior who is able to share her war […]
This post was sent to us by a young man who has a brother diagnosed with Autoimmune Encephalitis. You can share your story about AE. Please read on for a sibling perspective: June 10, 2013 marked my brother Sammy’s return from Duke after 8 long months. There were no balloons, parades or red carpet moments, […]
We are hearing from many of you. Your stories fill me with passion to help families with this disease and fight to figure out a way to conquer it. But fighting is exhausting as we all know. And from somewhere inside of us, we keep finding a way to another path, another treatment, another doctor […]
I recently read an article about myself in the New York Times—well it wasn’t my name or my child but it was my story. Sandra Joy Stein wrote the article titled “Becoming the Parent With the Child in the Wheelchair.” I don’t know Ms. Stein personally, but I know her life. I had a young […]