My AE Journey

Ryan’s firsthand account from the UK of having autoimmune encephalitis March 23, 2018

Prior to contracting AE, I was a 26-year old male working in the pharmaceutical industry. I had the opportunity to travel to many different places across the world and lived a busy life. I was also a family man sharing life with my 2-year old daughter and better half. Late last year I contracted AE […]

“Brain under attack” by Carol Harbers May 5, 2017

Duke Health recently posted an article by Carol Habers that follows the four-year journey to an autoimmmune encephalitis diagnosis of Lucas Quinones-Reed.  “Reed, Quinones, and Lucas met with Dr. Heather Van Mater, MD, a pediatric rheumatologist and Dr. William Gallentine, DO, a pediatric neurologist. ‘They came in with a box full of medical records,’ said Van Mater. Immediately, she saw […]

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 […]

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 […]

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 […]

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 […]

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 […]

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 […]

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 […]