Category: Life with AE

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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Unexpected Career Interruption – You Can Come Back Stronger from Autoimmune Encephalitis

Many thanks to Will Earnhart for sharing his inspiring story reprinted below, which first appeared in the September 2017 Alaska Bar Association quarterly newspaper. As attorneys, many of us have type “A” personalities; always striving to be successful in our careers.  We never take a step back for fear of stopping the momentum.  Almost all …

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Zebras named Henry and Hadley with autoimmune encephalitis

“Mommy, the baby isn’t moving.” Words no parenting class can prepare you for. As I rushed to my son’s aid, I would find him face down, unresponsive behind the couch. His skin cold to the touch, his eyes glazed over, drool dripping from his mouth. Alive, but my little boy was not there, he was …

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A daughter remembers her mom to help others with AE

The following was sent to us by Erin Wicke Dankert to honor her mother Rita. “My family has been very open with my Mom’s experience in hopes of helping others with this condition.”  AEA is so appreciative of this personal sharing by all who loved Rita. In March, my family suffered the devastating loss of …

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“You can’t diagnose something you have never heard of before” – a UK woman’s story of autoimmune encephalitis

Smashing windows, self-harming, and shaving her own hair, Sarah Galloway had to be placed in mental hospital before doctors could determine her illness.  ChronicleLive reports on a 22 year-old woman who fell ill with autoimmune encephalitis as she was about to enter her final year of university. Click here to read the full story. We wish Sarah …

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