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.
Researchers and clinical professionals interested in the study of encephalitis descended on London on Monday, December 4, for the UK-based Encephalitis Society annual conference . More than 120 people from the UK, USA, Denmark the Netherlands and Indonesia joined for a day of presentations and networking on topics surrounding encephalitis. The conference ended with the …
You are Invited Live Webinar on Autoimmune Neurology January 18, 2018 2:00 pm MST The Rocky Mountain MS Center is hosting a public webinar presented by Dr. Amanda Piquet on The Emerging and Evolving Field of Neuroimmunology. This webinar is free and open to all. Dr. Piquet will cover autoimmune encephalitis, autoimmune epilepsy and Stiff-person …
Autoimmune encephalitis was featured at a November 21, meeting of the Osler Club sponsored by the John P. McGovern Academy of Oslerian Medicine at the University of Texas Medical Branch’s (UTMB). Following a sit-down dinner, the 48 attendees, many of whom were physicians and physicians in training, filled the room to capacity for the program …
“She probably has a month left before she is in a persistent vegetative state or dies.” These are not words that you or your loved ones want to hear any time, but especially when you are only 25. Friends came to say goodbyes and the outlook was bleak. Just six months prior (during the Summer …
2017 has been a difficult year for many families facing autoimmune encephalitis. Despite the courageous work of AEA volunteers, staff, and board of directors, many people still feel they are battling this hideous illness alone. We hear from these folks weekly. In this season of giving, now is the perfect time to transform lives with …
For many AE patients and family members, time seems to stand still during the long hours spent in the hospital, infusion centers, traveling, or even at home while recovering. This might be eased by the simple pleasure of listening to music. While classical or jazz may be pleasant to one patient, it might not be for …
My name is Leah Ehle. I am married and have two Pugs. I live in Connecticut and work as a Nurse Practitioner in the field of gastroenterology. I have worked in the medical field for over 10 years, first in oncology and then after my masters I went into gastroenterology. I have always prided myself …
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 …
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 …
“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, …
