Blog

(Durham, N.C.)—The Autoimmune Encephalitis Alliance, a 501(c)(3) non-profit organization, is pleased to announce John “Spencer” Spencer as its new executive director. “On behalf of the Board of Directors of the Autoimmune Encephalitis Alliance, I welcome Spencer as executive director,” said Board Chair Will McDow. “Spencer is already hard at work, moving the Alliance forward in […]

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 […]

In a new paper published in Neurology, an official journal of the American Academy of Neurology, Dr. Jenny J. Linnoila et al., “report the frequency of coexisting herpes viruses (herpes simplex virus 1 [HSV-1] or HSV-2, varicella zoster virus, Epstein-Barr virus [EBV], cytomegalovirus, or human herpes virus 6 [HHV-6]) andautoantibodies in patients with encephalitis (herpes or autoimmune) […]

“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 […]

Jill Littrell’s new book, Neuroscience for Psychologists and Other Mental Health Professionals: Promoting Well-Being and Treating Mental Illness, presents the latest neuroscience and physiological explanations behind the major diagnostic categories of mental illness—including schizophrenia, depression, anxiety, and addiction—and explains the physiological bases that underlie traditional pharmaceutical treatment interventions.  Of particular note in the book is cutting-edge information […]

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, […]

A newly released precis provides clear diagnostic criteria for autoimmune encephalitis. This effort, lead by Dr. Domingo Escudero, Dr. Francesc Graus and Dr. Josep Dalmau, summarizes the Lancet Neurology article “A clinical approach to autoimmune encephalitis“. The Lancet Neurology article  provides the first broadly accepted criteria for diagnosing autoimmune encephalitis.  A previous AE Alliance blog reviewed the article and it’s connection to the first International […]

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 […]