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.
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 …
Every month the Transverse Myelitis Association holds a podcast on a topic that affects those with rare neuro-immune disorders. Experts in the field share the latest knowledge and answer questions from their community. On Thursday January 17th the podcast will cover Autoimmune Encephalitis and other rare autoimmune disorders. The Experts for this session are Dr. Michael Bradshaw …
Researchers at Johns Hopkins University published a retrospective study in which they examined the PET scans of patients who had been definitively diagnosed with autoimmune encephalitis over a ten-year period. They compared patients with anti-NMDA receptor encephalitis with other subgroups. They found those with anti-NMDAr AE consistently showed abnormalities in the form of hypometabolism (lower …
You are invited to join us on March 2, 2019 for the AE Family Weekend 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. Meet with experts in the field of Autoimmune Encephalitis. There is plenty of time …
In the past few weeks we have had some amazing people raise awareness for Autoimmune Encephalitis and raise funds for the AE Alliance, so we can continue to invest in research and improve clinical care. Let’s start in New York City. A friend of one of NYU’s hockey players got diagnosed in the spring with …
A study just published in the Journal of Neurology, conducted at 5 hospitals (4 Germany, 1 Austria) reported admission diagnosis in AE patients is still proving a challenge. The physicians attributed this to the fact that initial symptoms vary widely, causing the correct diagnosis to be delayed or even missed. They looked back at 50 …
In 2015 my daughter Marie was entering 7th grade. She was very nervous over the summer prior to entering the new school. The first 4 weeks of school she skipped out on doing her homework and participation in classes. When I confronted Marie she told me that going to the Math resource room was making …
