Faces of AE

Podcast by Elizabeth Nakano tells the story of surviving autoimmune encephalitis July 13, 2016

In 2014, Jake Pickard watched doctors try to save his girlfriend’s brain. What happened would dramatically change their relationship and their lives. Reporter Elizabeth Nakano headed to Eastham, MA, to interview them about the aftermath. Elizabeth’s story titled, Reset, can be heard through the Public Radio Exchange website. We are grateful to Elizabeth, Marirose, Jake, and PRX for […]

Nina recovers from autoimmune encephalitis and graduates from kindergarten July 27, 2016

“On December 21, 2015, Nina had a 45 minute seizure.” That’s how Nina’s story starts. It is an all too familiar one for many parents. The good news is that rapid diagnosis and treatment allowed Nina to come home after nearly 3 months in the hospital. She was able to graduate from kindergarten this spring. To […]

Dallas Cowboy Amobi Okoye recovers from NMDA receptor encephalitis August 24, 2014

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. […]

51 days in a coma, then recovery from autoimmune encephalitis August 10, 2016

It has been almost 2 years since Eman was diagnosed with AE. She spent 51 days in a coma. Now at age 21, she has recovered and is attending college. She shares her story below. Before my 18th birthday I was spending the holidays in Spain. We were on the island of Mallorca. Towards the end of […]

“We are Survivors” November 17, 2014

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 […]

Incredible 1st person account of surviving AE November 22, 2016

At this time of Thanksgiving, we are grateful to Kimberly and all of you who write to us. Whether you are looking for information, support, a doctor, or writing with appreciation we at AEA are thankful for you. Your generous donations allow us to aid people like Kimberly. Please consider showing your support for all […]

Fellow Survivors Gather at Florence Forth November 25, 2014

I am not a runner. I cringe at the thought of running. So naturally, when Susannah Cahalan told me about the Florence Forth Road Race in Durham NC, I was a bit skeptical. However, when she added that there would be fellow survivors of autoimmune encephalitis attending, I made my decision to go. There were […]

Celebrate the holidays with the story of a flourishing AE survivor December 22, 2015

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 […]

Meet a cute Colorado kid with AE and read his family’s story January 5, 2016

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 […]

AE patient stars in commercial for Ronald McDonald House February 9, 2016

Hailey Bekos and her family star alongside Cody Calafiore, a former contestant from CBS’s “Big Brother,” to promote Philadelphia’s Ronald McDonald House. Hailey is a 15 year old recovering from autoimmune encephalitis. When she first contracted the disease two years ago she lost the ability to walk, talk, and control her body. Now, thanks to treatment […]