My AE Journey

CNN’s sister network HLN to air show on autoimmune encephalitis on August 27, 2017 at 9 p.m. EST August 17, 2017

HLN will air an episode on autoimmune encephalitis as part of their series “Something’s Killing Me,” on August 27, 9 p.m. EST. The show will feature the experiences of Susannah Cahalan, Emily Gavigan, and Madison Jensen. We are pleased that AEA had the privilege of helping CNN answer questions about the disease and make introductions […]

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 […]

Susannah Cahalan and Dr. Najjar discuss AE August 14, 2014

Susannah Cahalan and Dr. Souhel Najjar NY Times best selling author and AE survivor Susannah Cahalan reads from Brain on Fire and has a conversation with the doctor who saved her life, Dr. Souhel Najjar. The Autoimmune Encephalitis Alliance hosted a series of Autoimmune Encephalitis awareness events at Duke University Medical Center, March 26 and 27, 2014.  International experts […]

Caroline shares her story of surviving autoimmune encephalitis October 20, 2016

“I was given the gift of survival, and the gift of having a voice to shed light on this little known disease.” From guest blogger, Caroline, who contacted AEA. We asked her to share her story. We hope her experience will spur on others in their own fight with AE. It’s safe to say 2015 was not […]

HLN, CNN, and NY Post produce stories on three ladies with autoimmune encephalitis September 13, 2017

Viewers nationwide watched on Sunday, August 27, as three ladies (survivors!) and their families shared stories of their tumultuous experiences with AE on the new HLN series “Something’s Killing Me.”  On Monday,  August 28, CNN followed the program with a feature story on  the disease . The rapid descent into illness that often occurs and the amazing […]

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 […]

Dallas Cowboy Amobi Okoye recovers from NMDA receptor encephalitis August 24, 2014

Dallas Cowboy defensive tackle Amobi Okoye has recovered from NMDA receptor encephalitis and is preparing for a return to the NFL this fall.  I had to read the story by The Dallas Morning News’ Rainer Sabin twice. Okoye is the first professional athlete to have autoimmune encephalitis and the first to attempt to return to professional sports. […]

“No miracle, just our brain” by Jules Morgan October 26, 2016

Neuroplasticity is the brain’s ability to reorganize itself by forming new neural connections, allowing neurons (nerve cells) in the brain to compensate for injury and disease and to adjust their activities in response to new situations or to changes in their environment. The following is from an article in The Lancet Neurology. Written by Jules Morgan, “No […]

Spanish language translation of earlier Sept. 13, post –HLN, CNN y NY Post producen historias sobre tres damas con encefalitis autoinmune September 28, 2017

Tenga en cuenta: usamos Google translate para la traducción de este blog, originalmente en el sitio web de la Alianza de Encefalitis Autoinmune. Nos disculpamos si hay algún error. Los espectadores de todo el país vieron el domingo, 27 de agosto, cuando tres damas (sobrevivientes) y sus familias compartieron historias de sus tumultuosas experiencias con […]

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. […]