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.
I remember so well the day I came back into consciousness in July 2017 in Washington. I was lying in a hospital bed, President Trump making a speech on TV, and ‘Get Well’ balloons on my left. First thought was, why am I here? And second was, isn’t Obama the U.S President? Shortly after, my …
New methods of studying the brain have been emerging in recent decades. One such method is the use of functional MRI, which is a way to measure how the brain works as opposed to regular MRI, which looks at structure. This week an exciting new research study was released by the Autoimmune Neurology Group in …
We have just partnered with Smart Patients, to create an online support community for patients and caregivers affected by AE. We receive so many questions on diagnosis, treatment and recovery, we thought we could help more people by bringing them together in a safe online community. Here you can ask questions, share experiences, gain insight …
Due to the nature of early symptoms in AE, studies have shown that patients often present first to psychiatrists or mental health facilities. Screening for the potential of autoimmune encephalitis may or may not be done, depending on awareness of the treating physicians and availability of testing. Drs. Pollack and Lennox of the UK have …
The widely-read journal Nature Reviews, in its specialized Neurology publication recently featured an article with a summary of the current state of knowledge and research related to neuroimmune illnesses that occur in children, including autoimmune encephalitis. Over a dozen experts collaborated on this paper. A sample of interesting points, which also largely apply to adults …
Despite much study centered around the antibodies that cause autoimmune encephalitis, there are still many unanswered questions. One of them is exactly how the severe symptoms of this disease are produced. Physicians conducting research in Berlin, Germany and Jerusalem, Israel have together conducted an observational study of patients with anti-NMDA receptor AE as compared to …
Texas Children’s Hospital’s “Annual Day of Hope” was well attended and a great success! Around 100 patients, family members, faculty and staff attended this event, lead by Eyal Muscal, MD, pediatric rheumatologist at TCH. Families mingled over lunch, children enjoyed creative activities and a talk was given by Dr. Muscal on the current status of …
Many autoimmune encephalitis survivors and family members long to know what caused the illness. Some causes are known, some are not. Among the known causes of anti-NMDA AE are ovarian teratomas and a few viruses, particularly the herpes simplex virus. Studies have shown some patients who develop herpes simplex encephalitis (HSE) go on to develop …
Two physicians from the Mayo Clinic have just published a paper for clinicians discussing the diagnostic testing available for the many autoimmune neurological illnesses including AE and its various forms. They also included treatment approaches used by their institution and many others. A few highlights include: These disorders often develop rather quickly and produce many …
I am a survivor, sometimes I feel weak but after all I have been through, I know I am stronger than I think I am. When I feel pity for myself I remember that there are people who have gone through worse situations than me. When you cannot change or control the situation, you must …
