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.
One of the major difficulties that many patients with AE face is that when the brain is affected, various symptoms present in different facets of human experience. These may include a person’s thoughts and behavior, emotions, speech, physical movements, memory, sleep habits, sensory experience, personality, etc. And these may even change from day to day as …
As difficult as diagnosis and treatment are for autoimmune encephalitis, fortunately for the community of patients, families, and caregivers, rapid progress has been made within only a decade. A group of physicians in Oxford, England has published a review for the journal Neuropharmacology that summarizes the various types of AE, including a classification of syndromes, …
Hanging out with friends and being a normal 19-year old seemed to be the right thing to do during the summer of 2010. Having a great time and then it all went black . . . I woke up in the hospital in Delta, Colorado. It was very faint. I remember my grandparents were there …
Researchers in three countries have come together to publish a review article in Current Opinion in Neurology, June 2017. Issues addressed in this comprehensive publication include: challenges in diagnosis, antibody detection methods, treatment decisions, seronegative cases and the challenges in monitoring patients over time. Points of emphasis include the following: Many autoimmune encephalopathies are central …
In many areas of medicine, treatments are increasingly becoming targeted in a way that benefits patients. This is happening in fields ranging from oncology to neurological disease. In this month’s Neurology Now, treatment for autoimmune encephalitis is being cited as one area where “precision medicine” holds promise for better and targeted treatments according to antibody …
As research on autoimmune encephalitis has progressed over the past 10 years, pioneers in the field have often referred to it as a heterogeneous group of disorders. The commonality in various forms of AE is the underlying pathologic mechanism in a patient’s own immune system. For unknown reason the patient’s immune system has produced antibodies …
The following was sent to us by Erin Wicke Dankert to honor her mother Rita. “My family has been very open with my Mom’s experience in hopes of helping others with this condition.” AEA is so appreciative of this personal sharing by all who loved Rita. In March, my family suffered the devastating loss of …
At the Autoimmune Encephalitis Alliance one of our goals is to promote research among professionals so that advancements can be made in the study and treatment of autoimmune encephalitis. We are pleased that in the spirit of collaboration the United Kingdom-based Encephalitis Society has extended the call for abstracts for their annual meeting to the …
The Journal of Neurology, Neuroscience, and Psychiatry reports on autoimmune encephalitis patients treated with immune based therapy including rituximab. Authors Dowland F, Swayne A, Bhuta S, et. al. discuss three cases and conclude, “The field of neuro-immunology has seen a plethora of newly discovered autoantibodies, yet there remain a significant number of patients, with features suggestive …
A very heavy heart, shock, and sadness met our hearing of the news that Dr. Jessica Panzer passed away after a short, courageous battle with non-smokers lung cancer. She received M.D. and Ph.D. degrees from the University of Pennsylvania in 2006. She continued on at the University of Pennsylvania and the Children’s Hospital of Philadelphia as …
