Category: Patient Support

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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Recovering anti-NMDAR patient shares advice via voice memo

Shawn Kregan contacted the Autoimmune Encephalitis Alliance in August of 2016, and we have been connecting regularly ever since. He has put together a voice memo to aid and inspire those who struggle with AE.  Shawn wants everyone to know that sharing experiences gives others confidence and strength, so don’t be afraid to tell people …

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Wall Street Journal reports sharing group health stories allows for insight for doctors

Rachel Emma Silverman from the Wall Street Journal reports that health care providers who organize patient discussion groups are finding that vast amounts of information are to be gained. They are asking patients with similar conditions to share stories. The idea behind these “experience groups” is to elicit insights about illnesses, with the goal of understanding and …

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World Encephalitis Day 2/22

World Encephalitis Day (“WED”) is celebrated every February 22 – just remember 222.  While we at the Autoimmune Encephalitis Alliance focus on autoimmune encephalitis, we are so happy to join in supporting all of those affecting by any form of encephalitis. To show your support for those with encephalitis of all types, wear the color red …

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AEA board member, Susannah Cahalan’s “Brain on Fire” to be shown at Toronto International Film Festival

One morning, 24-year-old Susannah Cahalan woke up in a hospital bed. She couldn’t speak. She couldn’t move. And she had no idea how she got there. The following is from the Toronto International Film Festival website. Based on Cahalan’s bestselling memoir Brain on Fire: My Month of Madness, director Gerard Barrett’s adaptation captures the horrifying …

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One is Too Many

When I talk about autoimmune encephalitis, I often get the question “How many people have autoimmune encephalitis?” My answer, “We don’t know.” The first few times I was asked these questions, I was apologetic for not having an answer.  I would answer, “This disease is so new the doctors haven’t yet compiled the statistics.” Or …

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