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.
We are thankful that studies are underway around the world on AE and its many subtypes to better understand the disease and develop new treatments. Recently an international group of physicians worked together to study 103 patients with antibodies to LGI1 and faciobrachial dystonic seizures, made up of those for whom the Oxford Autoimmune Neurology …
We are excited to announce Texas Children’s Hospital’s upcoming “AE Family Day of Hope” on July 28, 2018 in Houston, Texas. Children are welcome and activities will be provided! This day will be filled with educational information from physicians, nurses and neuropsychologists, therapists and child life staff. This day has been organized to bring together …
A recent article in Neurology Now, a publication of the American Association of Neurology for laypeople, notes many children and adolescents are continuing to experience cognitive problems, fatigue and behavioral problems even after recovery from anti-NMDA receptor AE. They observed these issues are affecting academic performance and quality of life in a Dutch study of …
AE survivors and family members had a unique opportunity to ask questions of two physicians in the field during Florence Forth weekend. Anusha Yeshokumar and Eliza Gordon-Lipkin were generous with their time and joined us by video conference. Their current interests are in many aspects of the disease, but a primary focus is long-term outcomes …
One of our goals at the AE Alliance is to distribute high-quality educational information for all who are touched by the illness. We have compiled a list of about a dozen articles that may be of interest. This is not an exhaustive list; it is merely a sampling of the main articles published on AE. …
We sometimes hear from patients and family members around the world. We are pleased to share this wonderful story of struggle and recovery written by a young girl’s father about their family’s experience with anti-NMDA receptor encephalitis. This disease strikes all ages of people in all countries. We share this story in the desire to …
As time passes and you and I feel better and better, people, even doctors, will tell you that we are fine, “it’s time to get on with life.” That sounds good to me and probably even better to you. But before you go rushing back out into that big wide world, I need you to …
We would like to invite all AE patients and their caregivers to make a difference in research on the disease. Please click on the correct link below and join us in moving the research forward. The AE Alliance is honored to be participating in a study authored by Dr. Anusha Yekoshumar at The Icahn School …
My name is Alex and I live in Toronto, Canada. I was diagnosed with Hashimoto’s Encephalitis in April, 2017. It’s hard to pinpoint a specific moment when my symptoms started because the onset was very gradual. In late 2012, I was working on my master’s degree. One evening in November I stayed alone at my …
The New England Journal of Medicine published an article by Josep Dalmau and Francesc Graus last month. This comprehensive article covered many aspects of the disease, including ideas about how the antibodies might cause dysfunction in the brain. Practical points of interest to lay persons included the following: AE includes a group of diseases in …
