Autoimmune Encephalitis

“You can’t diagnose something you have never heard of before” – a UK woman’s story of autoimmune encephalitis April 22, 2017

Smashing windows, self-harming, and shaving her own hair, Sarah Galloway had to be placed in mental hospital before doctors could determine her illness.  ChronicleLive reports on a 22 year-old woman who fell ill with autoimmune encephalitis as she was about to enter her final year of university. Click here to read the full story. We wish Sarah […]

From VGKC to LGI1 and Caspr2 encephalitis: The evolution of a disease entity over time April 18, 2017

Science Direct has published an article by authors van Sonderen, M.W.J. Schreurs , P.W. Wirtz , P.A.E. Sillevis Smitt, and M.J. Titulaer that a wide variety of clinical syndromes has been associated with antibodies to voltage-gated potassium channels (VGKCs). Six years ago, it was discovered that patients do not truly have antibodies to potassium channels, but […]

Bortezomib Treatment for Anti-NMDAR Autoimmune Encephalitis March 28, 2017

The Journal of the American Medical Association Nuerology reports the following by authors Volker Behrendt, MD1; Christos Krogias, MD1; Anke Reinacher-Schick, MD2; Ralf Gold, MD1; and Ingo Kleiter, MD1: Anti-NMDAR  autoimmune encephalitis, associated with ovarian teratoma, predominantly affects young females.1 Because antibodies against subunits of the NMDAR contribute to the pathogenesis, methods targeting humoral immunity are therapeutically efficacious.2 However, some patients have an unsatisfactory outcome after high-dose corticosteroids, apheresis […]

March 22, is “Brain Injury Awareness Day” March 22, 2017

March 22, of each year is Brain Injury Awareness Day. This year’s theme is “Not Alone.” While autoimmune encephalitis is not what most people consider a “brain injury,” the damage done by the disease can be similar. “I have been told by several world-class physicians who focus on AE, that recovery, and in particular the […]

Whittington family continues sharing autoimmune encephalitis story 6 years on March 23, 2017

Ellen Whittington was 12 years-old when she was first diagnosed with autoimmune encephalitis in 2012. At that time, she couldn’t talk or feed herself. Now, 17 year-old Ellen is a high school student and doing much better. Her family was interviewed by local NBC affiliate WRAL, as an update to their original story. Ellen and her family were […]

Treatment of autoimmune encephalitis with immune based therapies June 6, 2017

The Journal of Neurology, Neuroscience, and Psychiatry reports on autoimmune encephalitis patients treated with immune based therapy including rituximab.  Authors Dowland F, Swayne A, Bhuta S, et. al. discuss three cases and conclude, “The field of neuro-immunology has seen a plethora of newly discovered autoantibodies, yet there remain a significant number of patients, with features suggestive […]

Join 1600 others for Florence Forth Race and Family Lunch on March 4, 2017 February 23, 2017

You don’t have to be a runner or walker to support those affected by autoimmune encephalitis on March 4, 2017, but if you are, come share your spirit, laughter, and competitive spirit with 1600 soon-to-be friends at Florence Forth. There is also a wonderful Family Lunch for patients and their immediate families at noon (doors […]

World Encephalitis Day 2/22 February 20, 2017

World Encephalitis Day (“WED”) is celebrated every February 22 – just remember 222.  While we at the Autoimmune Encephalitis Alliance focus on autoimmune encephalitis, we are so happy to join in supporting all of those affecting by any form of encephalitis. To show your support for those with encephalitis of all types, wear the color red […]

New treatment for anti-NMDAR autoimmune encephalitis reports Charité – Universitätsmedizin Berlin February 2, 2017

One of the one of the largest university hospitals in Europe, Charite’, recorded significant progress in treating anti-NMDAR, including in patients who did not previously respond to treatment. Anti-NMDA receptor encephalitis is an inflammatory disease that affects the central nervous system. It is a rare autoimmune disease that results in the body producing antibodies against […]

Largest fundraiser for AEA, “Florence Forth,” coming up on March 4 January 24, 2017

Did you know that our largest fundraiser is coming up on March 4, 2017, in Durham NC? That’s right, it is time for the 5th annual Florence Forth run/walk, and Family Lunch.  Individuals and teams are welcome. The events in 2016 attracted almost 1500 runners/walkers, 300 volunteers, and 150 family members of those affected by […]