AE Alliance Blog

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.

Clinical approach to the diagnosis of autoimmune encephalitis in the pediatric patient

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 …

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Jim’s AE Journey

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 …

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Yoga Time

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, …

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Krissy’s AE journey

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 …

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Announcing New Leadership

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 …

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We are changing things up!

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 …

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OHIO – AEA Support Group Meeting

We are excited to announce the first AEA Support Group Meeting in Ohio, the first of many to come! This Support Group brings together patients and caregivers that have been affected with Autoimmune Encephalitis. The support group provides an opportunity for patients and caregivers to share personal experiences and feelings, coping strategies, or firsthand information …

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Giving Back on Giving Tuesday

When I was diagnosed with anti-NMDA receptor encephalitis in 2010, I didn’t understand what that meant – and not just because I had a brain disease. My symptoms, ranging from paranoia and mania to the inability to walk or use my hands, seizures, and no longer being able to read or follow conversations, varied so …

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