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 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-). …
The Board of Directors of the AE Alliance seeks an Executive Director to lead its global efforts in educating physicians, supporting patients, families, and caregivers, and advocating for a cure to autoimmune encephalitis. THE LEADERSHIP OPPORTUNITY Reporting to the Board of Directors, the Executive Director of AE Alliance strategically leads the organization and its staff …
Team Fledderjohn is fundraising and raising AE Awareness in honor of their son Alex, a bright young man who was diagnosed with Anti-NMDAR Autoimmune Encephalitis after being misdiagnosed for over 7 years. Please join them on August 17, 2019 in West Chester, Ohio for an AE Awareness gathering. They will have a neurologist and psychiatrist …
The Dewees Family is organizing a 5K run to raise awareness for Autoimmune Encephalitis. March 2019, just one day after turning 13, Luke Dewees was diagnosed with Autoimmune Encephalitis. The next month was a terrifying and trying time. Luke spent more than 3 weeks in the hospital battling this rare and evasive disease. With the …
Robert 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, Robert feels he is lucky. Lucky to have been diagnosed quickly, lucky to have received proper treatment. …
