AEA
Giving Tuesday, celebrated on the Tuesday following Thanksgiving (in the US), is a global giving movement in it’s sixth year. In response to shopping events Black Friday and Cyber Monday, #GivingTuesday kicks off the charitable season, when many focus on their holiday and end-of-year giving. We are always so touched at AEA by the generous spirit […]
Ellen Whittington was 12 years-old when she was first diagnosed with autoimmune encephalitis in 2012. At that time, she couldn’t talk or feed herself. Now, 17 year-old Ellen is a high school student and doing much better. Her family was interviewed by local NBC affiliate WRAL, as an update to their original story. Ellen and her family were […]
As difficult as diagnosis and treatment are for autoimmune encephalitis, fortunately for the community of patients, families, and caregivers, rapid progress has been made within only a decade. A group of physicians in Oxford, England has published a review for the journal Neuropharmacology that summarizes the various types of AE, including a classification of syndromes, […]
“I am a walking miracle.” These are the words of Amobi Okoye, who shared intimate details of his battle with anti-NMDA receptor encephalitis on ESPN’s Monday Night Countdown this week. Drafted by the Texans at only 19 years old, he played 6 seasons for Houston, then 2 for Chicago. He was the picture of health, […]
March 22, of each year is Brain Injury Awareness Day. This year’s theme is “Not Alone.” While autoimmune encephalitis is not what most people consider a “brain injury,” the damage done by the disease can be similar. “I have been told by several world-class physicians who focus on AE, that recovery, and in particular the […]
AEA was honored to co-host two educational events in June, featuring one of the world’s foremost experts on autoimmune encephalitis, Dr. Sean Pittock. The events, including a dinner presentation and Grand Rounds, where held on June 12 and 13, in Los Angeles, California, and were co-sponsored by AEA, the Keck School of Medicine of University […]
The AE Alliance turned five years old yesterday! Five years ago on Dec. 17, two families that had kids with AE came together in hopes that they could start something to help others suffering from this little-understood disease. The vision was to not only disseminate information to help patients but also to give support to […]
The Journal of the American Medical Association Nuerology reports the following by authors Volker Behrendt, MD1; Christos Krogias, MD1; Anke Reinacher-Schick, MD2; Ralf Gold, MD1; and Ingo Kleiter, MD1: Anti-NMDAR autoimmune encephalitis, associated with ovarian teratoma, predominantly affects young females.1 Because antibodies against subunits of the NMDAR contribute to the pathogenesis, methods targeting humoral immunity are therapeutically efficacious.2 However, some patients have an unsatisfactory outcome after high-dose corticosteroids, apheresis […]
One of the major difficulties that many patients with AE face is that when the brain is affected, various symptoms present in different facets of human experience. These may include a person’s thoughts and behavior, emotions, speech, physical movements, memory, sleep habits, sensory experience, personality, etc. And these may even change from day to day as […]
Experts in the field of AE came together in 2016 to establish a set of clinical diagnostic criteria to be used early in the course of disease (Graus et al). This was developed so that patients might be diagnosed with suspected AE and treated promptly, while still awaiting test results or in areas where antibody […]