My AE Journey

“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 […]

Fighter July 20, 2018

I am a survivor, sometimes I feel weak but after all I have been through, I know I am stronger than I think I am. When I feel pity for myself I remember that there are people who have gone through worse situations than me. When you cannot change or control the situation, you must […]

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, […]

A daughter remembers her mom to help others with AE June 21, 2017

The following was sent to us by Erin Wicke Dankert to honor her mother Rita. “My family has been very open with my Mom’s experience in hopes of helping others with this condition.”  AEA is so appreciative of this personal sharing by all who loved Rita. In March, my family suffered the devastating loss of […]

Vanessa’s amazing story from Seattle September 15, 2018

I remember so well the day I came back into consciousness in July 2017 in Washington. I was lying in a hospital bed, President Trump making a speech on TV, and ‘Get Well’ balloons on my left. First thought was, why am I here? And second was, isn’t Obama the U.S President? Shortly after, my […]

AE makes us “wiser, wearier and stronger” August 28, 2013

I recently read an article about myself in the New York Times—well it wasn’t my name or my child but it was my story. Sandra Joy Stein wrote the article titled “Becoming the Parent With the Child in the Wheelchair.” I don’t know Ms. Stein personally, but I know her life. I had a young […]

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 […]

A Case of Anti-LGI1 Encephalitis July 3, 2017

As research on autoimmune encephalitis has progressed over the past 10 years, pioneers in the field have often referred to it as a heterogeneous group of disorders. The commonality in various forms of AE is the underlying pathologic mechanism in a patient’s own immune system. For unknown reason the patient’s immune system has produced antibodies […]

Autoimmune Encephalitis Survival Story October 3, 2018

In the Summer of 2017, I was a 46-year old mom of two young children, working part time as an attorney, just returning from a weekend away with my girlfriends. I was having difficulty sleeping, but often had insomnia this time of year.  My thoughts were becoming jumbled and weren’t making sense.  Little did I […]