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.
“Rituximab is effective and safe as a second-line immunotherapy for autoimmune limbic encephalitis, regardless of autoantibody status. Additional monthly rituximab therapy might potentiate the efficacy of rituximab,” concludes the authors of this Rituximab study published in medical journal, Neurology. Lucy Piper of News Medical, an online, open-access medical information provider has published the article”Rituximab shows second-line promise in …
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 …
I never thought my life would contain a list of clichés: “What doesn’t kill you makes you stronger;” “Act like every day is your last;” or “Attitude is everything.” I never thought those would be mantras ringing through my ears day in and day out. I never thought that 24 years of “memories I …
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 …
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 …
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 …
