For many AE patients and family members, time seems to stand still during the long hours spent in the hospital, infusion centers, traveling, or even at home while recovering. This might be eased by the simple pleasure of listening to music. While classical or jazz may be pleasant to one patient, it might not be for …
One of the first studies on long-term neurobehavioral outcomes in patients affected by AE will be presented by Anusha Yeshokumar, MD, during the upcoming Encephalitis Society meeting in London. This may be difficult news for some AE patients, however at times it is comforting to know that what one suffers is not unusual. The study found that …
March 22, of each year is Brain Injury Awareness Day. This year’s theme is “Not Alone.” While autoimmune encephalitis is not what most people consider a “brain injury,” the damage done by the disease can be similar. “I have been told by several world-class physicians who focus on AE, that recovery, and in particular the …
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 …
“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 …
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 …
“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, …
Pro Football Talk’s Josh Alper writes, Former Texans first-round pick Amobi Okoye made an appearance at this year’s draft to announce a Texans pick and then made an announcement of his own about his hopes of returning to the field after recovering from autoimmune encephalitis. Okoye, who also played for the Bears, spent three months in …
I never thought my life would contain a list of clichés: “What doesn’t kill you makes you stronger;” “Act like every day is your last;” or “Attitude is everything.” I never thought those would be mantras ringing through my ears day in and day out. I never thought that 24 years of “memories I …
As his mom, Brenna, describes him, “Rama’s best gifts have always been his sweetness and compassion to animals. He has always been a creative kid, telling stories with his Legos, doing art, and climbing trees.” In this three-part post, we hope you will enjoy getting to know Rama and his family’s story, as relayed by …
