Faces of AE

Maddi beats autoimmune encephalitis June 7, 2016

The following is an excerpt from Maddi Beats AE, a read-worthy blog by Tricia Rispoli. “I wasn’t sure what time it was, but I knew it was really early. I hadn’t slept yet. I was too afraid to roll over and check the time and wake Maddi, but I knew it had been hours. This was the […]

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 […]

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 […]

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 […]

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 […]

There’s no P in my TSD June 29, 2016

“Mommy, are you okay?” an unfamiliar woman’s voice called through the hospital room’s bathroom door. It was 6 a.m. and she heard me retching, again. I hated that the hospital staff called me Mommy when the only one entitled to do so had lost his ability to speak. After six weeks in the neurology unit, […]

“When the Body Attacks the Mind” June 22, 2016

The Atlantic has published the story of AE survivor Sasha Egger. Sasha and his parents fight to survive a medical system that too often silos psychiatry from neurology.  In telling the story of their son Sasha, Daniel and Helen Egger, co-founders of the AE Alliance, tell the story of many AE families. A story of not […]

Imagine waking up with no memory of the past 3 months June 21, 2016

Imagine waking up in the hospital with no memory of the past three months. Amanda and her mother talk about her treatment and recovery from AE; including the care she received at UPenn Medical Center in this four-and-a-half minute video. Amanda’s mother, Kerri, told AEA, “We wanted to share our experience to help others. Upon learning […]

Former Bear, Dallas Cowboy with autoimmune encephalitis attempts football comeback June 16, 2016

Pro Football Talk’s Josh Alper writes, Former Texans first-round pick Amobi Okoye made an appearance at this year’s draft to announce a Texans pick and then made an announcement of his own about his hopes of returning to the field after recovering from autoimmune encephalitis. Okoye, who also played for the Bears, spent three months in […]

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. […]