AE Alliance Blog

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.

AEA board member Susannah Cahalan gives keynote address in Florence, Italy

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 …

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Photographby Julie Monacella

“The Wonder Years” – A family’s journey getting to the diagnosis of autoimmune encephalitis

“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)

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Dr. Luca Bartolini’s podcast on anti-NMDA receptor encephalitis

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 …

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Dr. Luca Bartolini creates survey on best practices to treat anti-NMDA receptor encephalitis

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 …

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A clinical approach to diagnosis of autoimmune encephalitis

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 …

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England’s National Health Service releases evidence review on Intravenous Immunoglobulin for AE

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 …

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Autoimmune Encephalitis Alliance part of “Brain Awareness [email protected] Duke”

  The Autoimmune Encephalitis Alliance is participating in the 8th annual “Brain Awareness Week at Duke.” AEA will be tabling on Sunday, April 3, from 1 p.m. – 4 p.m. at the first ever Duke Institute for Brain Sciences (a.k.a.”DIBS)” Discovery Day. Join us in their new 10,000+ square-foot space for laboratory demonstrations, to learn how music can improve quality …

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Luncheon for patients with autoimmune encephalitis and their families draws 150 people from U.S. and Canada

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 …

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“Life After Encephalitis” a new book by Dr. Ava Easton

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 …

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