My AE Journey
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 […]
“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, […]
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 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 […]
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 […]
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 […]
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)
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 […]
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 […]