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.

Herpes simplex virus further explored in AE

Many autoimmune encephalitis survivors and family members long to know what caused the illness. Some causes are known, some are not. Among the known causes of anti-NMDA AE are ovarian teratomas and a few viruses, particularly the herpes simplex virus. Studies have shown some patients who develop herpes simplex encephalitis (HSE) go on to develop …

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Paper released on diagnosis and treatment

Two physicians from the Mayo Clinic have just published a paper for clinicians discussing the diagnostic testing available for the many autoimmune neurological illnesses including AE and its various forms. They also included treatment approaches used by their institution and many others. A few highlights include: These disorders often develop rather quickly and produce many …

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Fighter

I am a survivor, sometimes I feel weak but after all I have been through, I know I am stronger than I think I am. When I feel pity for myself I remember that there are people who have gone through worse situations than me. When you cannot change or control the situation, you must …

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Persistent symptoms reported in children and adolescents after anti-NMDA receptor encephalitis

A recent article in Neurology Now, a publication of the American Association of Neurology for laypeople, notes many children and adolescents are continuing to experience cognitive problems, fatigue and behavioral problems even after recovery from anti-NMDA receptor AE. They observed these issues are affecting academic performance and quality of life in a Dutch study of …

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Peer-reviewed literature list available

One of our goals at the AE Alliance is to distribute high-quality educational information for all who are touched by the illness. We have compiled a list of about a dozen articles that may be of interest. This is not an exhaustive list; it is merely a sampling of the main articles published on AE. …

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Ravi’s story from India

We sometimes hear from patients and family members around the world. We are pleased to share this wonderful story of struggle and recovery written by a young girl’s father about their family’s experience with anti-NMDA receptor encephalitis. This disease strikes all ages of people in all countries. We share this story in the desire to …

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A Letter from your Brain

As time passes and you and I feel better and better, people, even doctors, will tell you that we are fine, “it’s time to get on with life.” That sounds good to me and probably even better to you.  But before you go rushing back out into that big wide world, I need you to …

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