My AE Journey
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 […]
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, […]
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 […]
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 […]
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. […]
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 […]
As we are in the midst of the holiday season, what better way to celebrate than with a survivor’s story. We are grateful for Brittany’s willingness to write about her illness trusting that it might give some peace (especially this time of year) to the AEA community. MY DARK WINTER By: Brittany DiCapua They say that […]
As we begin a new year we want to share a story with you. It is the story of a cute Colorado kid named Rama. We hope the detailed experiences of Rama and his family will offer personal insights that each of us can understand. The family moves from confusion to diagnosis to care to healing […]
Susannah Cahalan, journalist and author of The New York Times best-selling book Brain on Fire, and board of directors’ member of the Autoimmune Encephalitis Alliance, gave the keynote address at the Fifth Schizophrenia International Research Society conference in Florence, Italy (the podcast link is below). She shared her story of being struck down, and recovering […]
“Doctors couldn’t explain what was happening to Rory, and more important, they didn’t know how to stop its progression. Wracked with worry, I pored through medical journals late into the night. I connected online with other parents whose children suffered similar symptoms … Read More
(Photograph Julie Monacella)