My AE Journey

Leah Ehle’s autoimmune encephalitis survival story December 19, 2017

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 […]

Good News! June 22, 2021

In 2018 Lisa, Marie’s mom, shared her daughter’s journey with AE on our website. Today, she is happy to share an exciting update.  Marie’s has come a long way from her hospital stay in 2018 with the medication changes. This has made a big difference in 2019, the medication took about a year to adjust […]

AEA board member Susannah Cahalan gives keynote address in Florence, Italy May 10, 2016

Susannah Cahalan, journalist and author of The New York Times best-selling book Brain on Fire, and board of directors’ member of the Autoimmune Encephalitis Alliance, gave the keynote address at the Fifth Schizophrenia International Research Society conference in Florence, Italy (the podcast link is below). She shared her story of being struck down, and recovering […]

Autoimmune Encephalitis: the Oldest Survivor? January 10, 2017

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 […]

My New Normal: Reflections & Advice on Life After Autoimmune Encephalitis 20+yrs later January 1, 2018

“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 […]

“The Wonder Years” – A family’s journey getting to the diagnosis of autoimmune encephalitis May 4, 2016

“Doctors couldn’t explain what was happening to Rory, and more important, they didn’t know how to stop its progression. Wracked with worry, I pored through medical journals late into the night. I connected online with other parents whose children suffered similar symptoms … Read More

(Photograph Julie Monacella)

Recovering anti-NMDAR patient shares advice via voice memo March 15, 2017

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 […]

Amazing story of rebooting Kimberly’s brain featured on TV show March 9, 2018

Over the past 7 years, I’ve been battling, both Autoimmune Encephalitis and Epilepsy.  I’m very grateful to have received comprehensive care, including two brain surgeries, from an amazing team of neurologists at UCSF.  I’m very hopeful that what my case has enabled my doctors to discover will ultimately help others, and it’s my goal to […]

Maddi beats autoimmune encephalitis June 7, 2016

The following is an excerpt from Maddi Beats AE, a read-worthy blog by Tricia Rispoli. “I wasn’t sure what time it was, but I knew it was really early. I hadn’t slept yet. I was too afraid to roll over and check the time and wake Maddi, but I knew it had been hours. This was the […]

Whittington family continues sharing autoimmune encephalitis story 6 years on March 23, 2017

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 […]