The AE Alliance blog endeavors to educate, inspire hope and build a community among patients, families and caregivers. This blog is written for families, patients, caregivers and anyone interested in learning more about autoimmune encephalitis.
“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 …
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 …
The following is from The Lancet Neurology and is a response from Francesc Graus and Josep Dalmau first published in Sept. 2016. We thank Silvia Morbelli and colleagues for their comments on the role of brain 18fluorodeoxyglucose (18F-FDG) PET imaging in the management of autoimmune encephalitis. We agree about the potential use of 18F-FDG-PET in the diagnosis and evaluation …
You can help support the fight against autoimmune encephalitis when you shop through Amazon. “AmazonSmile” is a simple and automatic way for you to support AEA every time you shop, at no cost to you. When you shop at you’ll find the exact same low prices, selection and convenient shopping experience as Amazon.com, with the added …
The following was reported by Stephanie Innes at the Arizona Daily Star. The opening of the new Children’s Postinfectious Autoimmune Encephalopathy Center in Tucson marks a new era of pediatric research for the University of Arizona, UA president Ann Weaver Hart said Tuesday during an opening event held at Banner-University Medical Center Tucson. The disorders hit …
Abstract Reprinted from Health and Human Services Author Manuscript – Over the last 10 years the continual discovery of novel forms of encephalitis associated with antibodies to cell-surface or synaptic proteins has changed the paradigms for diagnosing and treating disorders that were previously unknown or mischaracterized. We review here the process of discovery, the symptoms, …
One morning, 24-year-old Susannah Cahalan woke up in a hospital bed. She couldn’t speak. She couldn’t move. And she had no idea how she got there. The following is from the Toronto International Film Festival website. Based on Cahalan’s bestselling memoir Brain on Fire: My Month of Madness, director Gerard Barrett’s adaptation captures the horrifying …
(Durham, N.C.)—The Autoimmune Encephalitis Alliance, a 501(c)(3) non-profit organization, is pleased to announce John “Spencer” Spencer as its new executive director. “On behalf of the Board of Directors of the Autoimmune Encephalitis Alliance, I welcome Spencer as executive director,” said Board Chair Will McDow. “Spencer is already hard at work, moving the Alliance forward in …
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 …
In a new paper published in Neurology, an official journal of the American Academy of Neurology, Dr. Jenny J. Linnoila et al., “report the frequency of coexisting herpes viruses (herpes simplex virus 1 [HSV-1] or HSV-2, varicella zoster virus, Epstein-Barr virus [EBV], cytomegalovirus, or human herpes virus 6 [HHV-6]) andautoantibodies in patients with encephalitis (herpes or autoimmune) …
