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.

Florence Forth

Our family has always been a running family. A jogging stroller lived on our porch or dining room for years. We ran when full time jobs became stressful, while Laura and Florence napped as babies, and just exercising our dog. When Florence fell ill with an unknown disease at age two, we increased our running …

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One is Too Many

When I talk about autoimmune encephalitis, I often get the question “How many people have autoimmune encephalitis?” My answer, “We don’t know.” The first few times I was asked these questions, I was apologetic for not having an answer.  I would answer, “This disease is so new the doctors haven’t yet compiled the statistics.” Or …

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Disseminating Knowledge

One core mission of the Autoimmune Encephalitis Alliance is to share the latest research to improve the clinical diagnosis and treatment of AE.  A list of symptoms and a brief discussion of diagnosis are provided in the Living with AE section of this website. In January 2013, the AE Alliance coordinated a Grand Rounds at Duke University Medical Center. Our board members …

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Treatment and prognostic factors for long-term outcome in patients with anti-NMDA receptor encephalitis: an observational cohort study

Treatment and prognostic factors for long-term outcome in patients with anti-NMDA receptor encephalitis: an observational cohort study Titulaer MJ, McCracken L, et al. Lancet Neurology; London 12.2 (Feb 2013): 157-65. https://www.ncbi.nlm.nih.gov/pubmed/23290630 Anti-NMDA receptor encephalitis is an autoimmune disorder in which the use of immunotherapy and the long-term outcome have not been defined. We aimed to …

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Antibodies to surface dopamine-2 receptor in autoimmune movement and psychiatric disorders

Dale et al Brain. 2012 Nov;135(Pt11):3453-68. https://academic.oup.com/brain/article/135/11/3453/272463 Recent reports of autoantibodies that bind to neuronal surface receptors or synaptic proteins have defined treatable forms of autoimmune encephalitis. Despite these developments, many cases of encephalitis remain unexplained. We have previously described a basal ganglia encephalitis with dominant movement and psychiatric disease, and proposed an autoimmune aetiology. …

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Central nervous system neuronal surface antibody associated syndromes: review and guidelines for recognition

Central nervous system neuronal surface antibody associated syndromes: review and guidelines for recognition Zuliani et al. J Neurol Neurosurg Psychiatry. 2012 June; 83(6): 638-645. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3348613/ The concept of antibody mediated CNS disorders is relatively recent. The classical CNS paraneoplastic neurological syndromes are thought to be T cell mediated, and the onconeural antibodies merely biomarkers for …

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