Category: Life with AE

Whittington family continues sharing autoimmune encephalitis story 6 years on

Ellen Whittington was 12 years-old when she was first diagnosed with autoimmune encephalitis in 2012. At that time, she couldn’t talk or feed herself. Now, 17 year-old Ellen is a high school student and doing much better. Her family was interviewed by local NBC affiliate WRAL, as an update to their original story. Ellen and her family were …

Read more

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 …

Read more

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 …

Read more

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 …

Read more

Autoimmune Encephalitis: the Oldest Survivor?

In her New York Times bestseller Brain on Fire: My Month of Madness, journalist Susannah Cahalan describes dreadful psychological experiences associated with her eventual diagnosis of autoimmune encephalitis. Compared with other forms of autoimmune disease and other types of encephalitis, knowledge about this particular diagnostic entity seems to be unfamiliar to most physicians; the medical …

Read more

Things siblings of children with special needs struggle with – from The Washington Post

Jamie David Smith has written a terrific article on the struggles of siblings of special needs children. Smith speaks to Rachel Feichter whose daughter, Talia, has autoimmune encephalitis. “Documentary filmmaker Rachel Feichter has a typically developing 11-year-old and a 7-year-old, Talia, who has special needs as a result of a neurological autoimmune disease, Hashimoto’s encephalitis. …

Read more

Fun way to explain anti-NMDAR autoimmune encephalitis to kids…and adults

It is rare to find humor in autoimmune encephalitis but James Radke and Levent Efe created a story on anti-NMDAR that is accessible to kids and adults alike. Think of it as a guide to anti-NMDAR for dummies. This creative look at “Cleo” and “Irene” the neurons, and  “Shelia” who has anti-NMDAR on her membrane is …

Read more

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 …

Read more