The AE Alliance blog endeavors to educate, inspire hope and build a community among patients, families and caregivers. This blog is written for families, patients, caregivers and anyone interested in learning more about autoimmune encephalitis.
It was almost exactly ten years ago that I rushed home from a coffee shop, paranoid and terrified, and my journey with autoimmune encephalitis began. A college sophomore, I ended up in the ER and then a psychiatric ward, eventually “diagnosed” with Psychosis: Unknown. There have been a lot of unknowns along the way. My …
For World Encephalitis Day 2019, Dr. Muscal talks about his work and research and how he sees the field of AE evolving. Dr. Eyal Muscal is a pediatric rheumatologist at Texas Children’s Hospital with a MS Degree in Clinical Research whose activities include patient care, fellowship education, quality improvement, and clinical research. He is the Childhood …
For World Encephalitis Day 2019, Dr. Gallentine talks about his work and research and how he sees the field of AE evolving. Dr. William Gallentine is a pediatric neuroligst at Stanford University in Palo Alto CA. His research interests focus on the role of inflammation and genetics in the development of epilepsy, and the overlap between …
My name is Tori Calaunan and I was diagnosed with anti-NMDA receptor encephalitis in the summer of 2018. Before that time, I was a perfectly healthy 24-year-old. I was going through life, had a job that I loved and was in nursing school. In April 2018 I was feeling a bit weird. My right leg …
Seventeen days till World Encephalitis Day. Let’s all raise awareness for Autoimmune Encephalitis, because it is still too often people with AE go undiagnosed or misdiagnosed. The AE Alliance has created an infographic to make it easy to spread AE awareness. You can print it and hand it out to your friends, neighbors and coworkers. …
It has become apparent over the course of time in studies of autoimmune encephalitis that unfortunately some patients go on to develop epilepsy. It is a minority, but occurs in a significant percentage of patients. A new publication just out from two centers in Rome, Italy reported results from a retrospective study conducted on adult …
Just a reminder to let you know that the AE Family weekend is coming up in about four weeks on March 2 in Durham, NC. Meet other families going through similar challenges. Share stories and learn about the latest treatments and discover strategies to make every day better. HAVE FUN AND GET ACTIVE with our annual …
Late last year a systematic review of AE syndromes, diagnosis, and treatment was published in Frontiers in Neurology by two physicians in Austria, and reviewed by physicians in Australia and the US (Mayo Clinic). We felt it may be useful as an up-to-date reference. Once again, the importance of early recognition of AE with prompt …
A group of physicians from Germany have recently published an article in Seminars in Immunopathology, noting significant differences in the incidence of autoimmune diseases of the central nervous system in males versus females. They stated diseases such as multiple sclerosis, neuromyelitis optica and autoimmune encephalitis are more likely to be found in females. Some examples …
World Encephalitis Day is the global awareness day for people who have been directly or indirectly affected by encephalitis. Founded by The Encephalitis Society in the UK in 2014, it is held on February 22 each year and has reached over 80 million people in the past five years. The color associated with this day …
