Category: Life with AE

Ravi’s story from India

We sometimes hear from patients and family members around the world. We are pleased to share this wonderful story of struggle and recovery written by a young girl’s father about their family’s experience with anti-NMDA receptor encephalitis. This disease strikes all ages of people in all countries. We share this story in the desire to …

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Join your AE Community on March 3rd!

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 …

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My New Normal: Reflections & Advice on Life After Autoimmune Encephalitis 20+yrs later

“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 …

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Leah Ehle’s autoimmune encephalitis survival story

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 …

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Amobi Okoye, NFL Defensive Tackle, shares a remarkable story of surviving AE

“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, …

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Lukapalooza Costume Bash to Benefit AEA

The inaugural Lukapalooza Costume Bash to benefit the AE Alliance was a great success and is in the books! Luke Shriver, an AE survivor, and his family and friends had an amazing time while sharing awareness and raising funds for the AE Alliance.  The spirit of community, courage, and the love of good music brought a …

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