My AE Journey

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 […]

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 […]

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 […]

Lisa shares her journey with Autoimmune Encephalitis February 20, 2019

I was diagnosed with LGI1 Autoimmune Encephalitis (AE) in February 2018. Encephalitis is a devastating brain disease that affects about 500,000 people worldwide.  The type that I have is called LGI1 Autoimmune Encephalitis – it is extremely rare and known to affect about 0.83 people in a million. With Autoimmune Encephalitis the body starts to […]

Mike shares his Mom’s story with Autoimmune Encephalitis March 27, 2019

It was September 4th, 2018, 18 days before I was getting married. I received a phone call from one of my mom’s co-workers. Apparently, my mom didn’t come in to work that day and didn’t call in sick either. They got my number from her emergency contacts. They told me that she had been a […]

Together we can make an impact! June 23, 2019

Bob Given was diagnosed with CASPR2 encephalitis at the age of 71. Up until that point he was running his CPA firm and was heavily involved in the community. Then suddenly his world was taken from him. Nevertheless, Bob feels he is lucky. Lucky to have been diagnosed quickly, lucky to have received proper treatment. […]

Jim’s AE Journey January 7, 2020

While living in Idaho Falls Idaho in October 2011 my husband, 44-year-old Navy Gulf War Veteran (1987-1992), started having occasional dizziness. January 2012 he started having multiple daily “episodes” lasting a couple of minutes… distorted vision, traveling goosebumps from right temple down right side of body jumping to left leg and traveling up left side […]

Andrew’s Race February 22, 2020

We are excited to announce that starting today, on World Encephalitis Day, we will be following Andrew as he prepares for the Ironman 70.3 race in Victoria, B.C. on May 31. Andrew is an AE survivor and wants to raise awareness. He already writes about his life with AE on his own blog and he […]

Good News! June 22, 2021

In 2018 Lisa, Marie’s mom, shared her daughter’s journey with AE on our website. Today, she is happy to share an exciting update.  Marie’s has come a long way from her hospital stay in 2018 with the medication changes. This has made a big difference in 2019, the medication took about a year to adjust […]

“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 […]