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.
You are invited to join us from March 6 – 8, 2020 for the AEA Family Weekend in Durham, NC. Meet other families going through similar challenges. Share stories and learn about the latest treatments and discover strategies to make every day better. Meet with experts in the field of Autoimmune Encephalitis. There is plenty …
We are excited to announce the first AEA Support Group Meeting in Ohio, the first of many to come! This Support Group brings together patients and caregivers that have been affected with Autoimmune Encephalitis. The support group provides an opportunity for patients and caregivers to share personal experiences and feelings, coping strategies, or firsthand information …
When I was diagnosed with anti-NMDA receptor encephalitis in 2010, I didn’t understand what that meant – and not just because I had a brain disease. My symptoms, ranging from paranoia and mania to the inability to walk or use my hands, seizures, and no longer being able to read or follow conversations, varied so …
AE Alliance is proud to be joining forces with The Anti-NMDA Receptor Encephalitis Foundation, Encephalitis 411, the Encephalitis Society, HESA, and Encephalitis Global in organizing the World Encephalitis Day 2020 Conference in Dallas, TX. The World Encephalitis Day 2020 Conference welcomes survivors and caregivers to attend and interact while celebrating World Encephalitis Day. We feel very fortunate to have …
We are excited to announce the first AEA ‘in-person’ Support Group meeting on December 7 at the Port Washington Library located at 1 Library Drive, Port Washington, NY 11050 from 2 pm – 4:30 pm. The Support Group Leader, Sydney, has organized for Melissa Jensen, M.A., CCC-SLP of Transitions of Long Island to join us as our guest practitioner to discuss cognitive …
The last 2 years of my life seem to have disappeared from my memory. Gone. Holidays, weddings, a funeral, birthday parties, Christmas and New Year. Friends and family keep telling me things I’ve done and the way I’ve behaved, some of which are very embarrassing to hear. It’s just not me. This is the result of the …
AE is often diagnosed by the detection of specific antibodies against different neuronal surface antigens in the cerebrospinal fluid (CSF), the blood or both. However, the antibody testing usually takes several days. A group at Ulm University in Germany reviewed the basic CSF findings of 1,305 patients with the 10 most important AE subtypes, for the …
The American Academy of Child & Adolescent Psychiatry is holding its 66thAnnual Meeting, October 14-19 in Chicago, IL. On Wednesday, October 16, the focus will be on Autoimmune Brain Disorders. Autoimmune brain disorders are a spectrum of illnesses characterized by inflammation of the central nervous system (CNS). Child and adolescent psychiatrists must become familiar with …
AE Alliance receives questions on a daily basis from patients and caregivers on diagnosis, treatment, recovery, and research. Sometimes these questions are very specific, but often they will apply to a lot of patients and caregivers. Starting in October, we will have a new segment in our newsletter: Ask the Panel. Your question will be …
Early diagnosis of AE allows for aggressive treatment, which greatly improves recovery outcomes. On the contrary, delayed diagnosis and treatment can lead to permanent brain injury or even loss of life. In literature, no work has been published which compares clinical, radiological and laboratory characteristics of patients with definite autoantibody-positive AE (AE+) and autoantibody-negative AE (AE-). …
