Life with AE
We are all survivors of autoimmune encephalitis. Patients, families, friends, caretakers, doctors, nurses, rehabilitation specialists, we have all endured the worst this disease can throw at us. And we are surviving. This weekend I had the chance to meet four amazing survivors. Each has their own story to tell. They shared the same stage: a six-year-old […]
As we begin a new year we want to share a story with you. It is the story of a cute Colorado kid named Rama. We hope the detailed experiences of Rama and his family will offer personal insights that each of us can understand. The family moves from confusion to diagnosis to care to healing […]
If you are reading this you already know that autoimmune encephalitis can be an isolating experience. That’s one reason the Autoimmune Encephalitis Alliance organizes and hosts the AE Family Lunch in association with the Florence Forth run-walk in Durham, NC. This year the AE Family Lunch will take place on March 5, 2016. All AE patients and families […]
World Encephalitis Day is February, 22, each year – just remember 222. This is a day for all of us affected by encephalitis, whether we are patients, family members, doctors, researchers, or caregivers, to come together and talk about our experiences with brain inflammation and the many forms it takes. While we at the Autoimmune […]
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 […]
Imagine waking up in the hospital with no memory of the past three months. Amanda and her mother talk about her treatment and recovery from AE; including the care she received at UPenn Medical Center in this four-and-a-half minute video. Amanda’s mother, Kerri, told AEA, “We wanted to share our experience to help others. Upon learning […]
“Mommy, are you okay?” an unfamiliar woman’s voice called through the hospital room’s bathroom door. It was 6 a.m. and she heard me retching, again. I hated that the hospital staff called me Mommy when the only one entitled to do so had lost his ability to speak. After six weeks in the neurology unit, […]
In 2014, Jake Pickard watched doctors try to save his girlfriend’s brain. What happened would dramatically change their relationship and their lives. Reporter Elizabeth Nakano headed to Eastham, MA, to interview them about the aftermath. Elizabeth’s story titled, Reset, can be heard through the Public Radio Exchange website. We are grateful to Elizabeth, Marirose, Jake, and PRX for […]
“On December 21, 2015, Nina had a 45 minute seizure.” That’s how Nina’s story starts. It is an all too familiar one for many parents. The good news is that rapid diagnosis and treatment allowed Nina to come home after nearly 3 months in the hospital. She was able to graduate from kindergarten this spring. To […]
It has been almost 2 years since Eman was diagnosed with AE. She spent 51 days in a coma. Now at age 21, she has recovered and is attending college. She shares her story below. Before my 18th birthday I was spending the holidays in Spain. We were on the island of Mallorca. Towards the end of […]