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 that starting today, on World Encephalitis Day, we will be following Andrew as he prepares for the Ironman 70.3 race in Victoria, B.C. on May 31. Andrew is an AE survivor and wants to raise awareness. He already writes about his life with AE on his own blog and he …
One more week until World Encephalitis Day. Let’s all raise awareness for Autoimmune Encephalitis because far too often people with AE still go undiagnosed or misdiagnosed. World Encephalitis Day, founded by the Encephalitis Society in the UK, is the global awareness day for people who have been directly or indirectly affected by encephalitis. This day …
Wow, just like that…, 2020 is here and my family and I find ourselves preparing for another Florence Forth and AE Alliance Family weekend. Approximately 20 of our family and friends will make the trip again this year to Durham from all over the country for Florence Forth, Saturday, March 7th. I can’t wait to …
Autoimmune encephalitis (AE) is an important and treatable cause of acute encephalitis. Diagnosis of AE in a developing child is challenging because of overlap in clinical presentations with other diseases and the complexity of normal behavior changes. Existing diagnostic criteria for adult AE require modification to be applied to children, who differ from adults in …
Dr. Rebecca Sadun is coming back to work with our tweens and teens at the AEA Family weekend. We are delighted to have her! Last year Dr. Sadun read a passage from “Brain on Fire” and then ask each teen to write the title and chapter names for the book about their journey and then pick one …
While living in Idaho Falls Idaho in October 2011 my husband, 44-year-old Navy Gulf War Veteran (1987-1992), started having occasional dizziness. January 2012 he started having multiple daily “episodes” lasting a couple of minutes… distorted vision, traveling goosebumps from right temple down right side of body jumping to left leg and traveling up left side …
New this year at the AEA Family Weekend is Yoga Time! On Sunday morning we will kick off the day with a Yin yoga class given by Meg Poe. As the name suggests, Yin yoga works on the yin tissues, also known as the connective tissues. Connective tissue responds best to a slow, steady load, …
My daughter Lola is 2 years old and recently suffered AE. Her lab results all came back negative for any virus, cancer or disease. Her lab work even showed that AE was not the cause but because she has a blood disorder they concluded she suffered from AE. Lola was doing just fine besides dealing …
The AE Alliance has accomplished so much with a small staff and a dedicated board. Yet there is so much to be done to change the trajectory of this disease – to ensure rapid diagnosis, appropriate treatment, and advanced research so that no one faces this disease alone. To achieve this mission requires taking the …
Every week I will share some new details on the 2020 AEA Family weekend because we are revamping this wonderful event! New in 2020 will be the location; the Museum of Life and Science in Durham, NC. This is a great location for everyone and every age and has so much to offer. Their outdoor space is most impressive. You …
