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Over the past 7 years, I’ve been battling, both Autoimmune Encephalitis and Epilepsy. I’m very grateful to have received comprehensive care, including two brain surgeries, from an amazing team of neurologists at UCSF. I’m very hopeful that what my case has enabled my doctors to discover will ultimately help others, and it’s my goal to […]
The importance of awareness of AE among child psychiatrists has been emphasized in a recent publication by Mooneyham, Gallentine and VanMater of the Duke University Children’s Hospital Autoimmune Brain Disease Program. They note that the nature of early symptoms may lead children to be evaluated first by a psychiatrist. These may include the acute or […]
Come join your AE community at the annual Florence Forth Road Race and AE Family Lunch on March 3, 2018 in Durham, NC. It’s a chance for AE survivors to join together and share stories. The center piece of the weekend is a walk/run on Saturday morning called Florence Forth. Then after the walk/run is […]
Autoimmune encephalitis experts at the Mayo Clinic published the first population-based study of AE in an effort to determine the incidence of the disease. The researchers found that in the last decade approximately 1 in every 100,000 people develop AE each year. This translates into approximately 4,000 new AE cases in the US annually and […]
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 […]
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 […]
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 […]