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.

Do you have experience with Rituximab/Rituxan as treatment for autoimmune encephalitis?

One of the most frequent requests we receive from patients/caregivers seeks greater information on the use of Rituximab (trade name is Rituxan). Are you a caregiver, recovering patient, or physician that has experience with the use of Rituximab as a treatment for AE that you believe would benefit others? There are two ways you can help. 1) Share …

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Anti-N-Methyl-D-Aspartate Receptor Encephalitis: A new challenging entity for consultation-liaison psychiatrist

Anti-N-Methyl-D-Aspartate Receptor Encephalitis: A new challenging entity for consultation-liaison psychiatrist Maccaferri et al Brain Disord Ther 2016 May; 5(2):215 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4959779/ Anti-N-methyl-D-aspartate receptor encephalitis is a relatively newly identified autoimmune neuropsychiatric disorder that predominantly affects children and young adults. Although psychiatric symptoms are highly prevalent and frequently severe, it has mainly been reported in neurological, but …

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Brazilian scientists find new Zika-linked brain disorder in adults

The following article was published by Rueters on April 11, 2016. “The new discovery now shows Zika may provoke an immune attack on the central nervous system as well.” Brazilian scientists have found a that there is a link between Zika and an autoimmune syndrome called acute disseminated encephalomyelitis, that attacks the brain and spinal cord. Zika, a mosquito-borne …

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Rituximab shows second-line promise in autoimmune limbic 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 …

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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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