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Susannah Cahalan, journalist and author of The New York Times best-selling book Brain on Fire, and board of directors’ member of the Autoimmune Encephalitis Alliance, gave the keynote address at the Fifth Schizophrenia International Research Society conference in Florence, Italy (the podcast link is below). She shared her story of being struck down, and recovering […]
“Doctors couldn’t explain what was happening to Rory, and more important, they didn’t know how to stop its progression. Wracked with worry, I pored through medical journals late into the night. I connected online with other parents whose children suffered similar symptoms … Read More
(Photograph Julie Monacella)
The following information was provided by Neurology, the official journal of the American Academy of Neurology. Dr. Luca Bartolini is interviewed about his survey in Neurology on how to treat anti-NMDA receptor encephalitis. The goal of the survey is to better understand best practices in treating this disease. The podcast can be found at Neurology® Clinical Practice […]
The following information was provided by Neurology, the official journal of the American Academy of Neurology. In the absence of data from clinical trials, anecdotal experience and expert opinion become the main source of knowledge on which medical decisions are made to treat anti-NMDA encephalitis. Clinical approaches and decision-making are apt to change over time […]
A clinical approach to diagnosis of autoimmune encephalitis Graus F, Titulaer MJ, et al. Lancet Neurology 2016 Apr; 15(4):391-404 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5066574/ Encephalitis is a severe inflammatory disorder of the brain with many possible causes and a complex differential diagnosis. Advances in autoimmune encephalitis research in the past 10 years have led to the identification of new […]
The National Health Service of England published the following review of IVIg for treatment of autoimmune encephalitis. The report was released in January 2016. “Evidence Review: Intravenous immunoglobulin for autoimmune encephalitis” Autoimmune encephalitis (AIE) is used to describe a group of disorders characterised by symptoms of limbic and extra-limbic dysfunction occurring in association with antibodies […]
Over 150 patients and family members affected by autoimmune encephalitis gathered in Durham, NC, for a luncheon on March 5. Known simply as the “Family Lunch” the event is a chance to meet others affected by autoimmune encephalitis, laugh, celebrate, remember those lost to the disease, and share stories both privately and publicly. Having grown in […]
Dr. Ava Easton, a health scientist and researcher specializing in encephalitis, acquired brain injury, and neuro-narratives, and a friend of the Autoimmune Encephalitis Alliance, has recently published a book titled Life After Encephalitis: A Narrative Approach. We are grateful that she contacted us about sharing this important work with patients, friends, caregivers and the medical community. Life After Encephalitis provides […]
Nearly 2000 runners, walkers, family members, volunteers, and supporters of all ages came out on Saturday to participate in the 4th annual Florence Forth Road Race to benefit the Autoimmune Encephalitis Alliance. Held in Durham, North Carolina, participants traveled from as far away as Germany, Colorado, Canada, Nebraska, Indiana, and California to be a part of […]
Today The Lancet released an important paper from Dr. Dalmau et al., providing the first broadly accepted criteria for diagnosing autoimmune encephalitis. Included in the paper are guidelines for diagnosing anti-body negative AE, a frustratingly difficult subset of AE cases to diagnose and thus treat. Many of the paper’s authors attended the International Symposium on Autoimmune […]