My AE Journey

Sharing a Florida Family Story: Fighting for the Prize August 30, 2013

We are hearing from many of you. Your stories fill me with passion to help families with this disease and fight to figure out a way to conquer it. But fighting is exhausting as we all know. And from somewhere inside of us, we keep finding a way to another path, another treatment, another doctor […]

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 […]

Life after autoimmune encephalitis: Alex shares his story July 24, 2017

Hanging out with friends and being a normal 19-year old seemed to be the right thing to do during the summer of 2010. Having a great time and then it all went black . . . I woke up in the hospital in Delta, Colorado. It was very faint. I remember my grandparents were there […]

Rebecca’s Mom October 25, 2018

I remember thinking when this year began that things were finally coming together for the Scheinert girls, who have had no shortage of ups and downs. My mom, two sisters, and I have been through it all together. I was diagnosed with Juvenile Rheumatoid Arthritis before I could walk, and a variety of other autoimmune […]

Sharing A Story- A Brother’s Homecoming October 6, 2013

This post was sent to us by a young man who has a brother diagnosed with Autoimmune Encephalitis.  You can share your story about AE. Please read on for a sibling perspective: June 10, 2013 marked my brother Sammy’s return from Duke after 8 long months. There were no balloons, parades or red carpet moments, […]

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 […]

Zebras named Henry and Hadley with autoimmune encephalitis August 30, 2017

“Mommy, the baby isn’t moving.” Words no parenting class can prepare you for. As I rushed to my son’s aid, I would find him face down, unresponsive behind the couch. His skin cold to the touch, his eyes glazed over, drool dripping from his mouth. Alive, but my little boy was not there, he was […]

Marie’s Voice November 28, 2018

In 2015 my daughter Marie was entering 7th grade. She was very nervous over the summer prior to entering the new school. The first 4 weeks of school she skipped out on doing her homework and participation in classes. When I confronted Marie she told me that going to the Math resource room was making […]

Sandra Stein capturing heart and sole in her Bloom Article October 21, 2013

I am in awe of writers… their ability to choose the exact word to bring the emotion or feeling directly to the reader. I am there. I am her. I feel this about Sandra because she is a mom warrior. And not only that, but a mom warrior who is able to share her war […]

Autoimmune Encephalitis Alliance represented at “Brain on Fire” movie premiere October 11, 2016

The movie adaptation of Susannah Cahalan’s New York Times best-selling book, Brain of Fire, premiered at the Toronto International Film Festival on Friday, September 16. The red-carpet event included pre- and post-movie talks by Charlize Theron, who produced the movie, director Gerard Barrett, Chloe Grace Moretz, who plays Susannah, Dr. Najjar, who diagnosed the disease, and Susannah’s husband, Stephen […]