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.
A group of talented local high school students from The Fine Arts Center will be holding “Play It FWD” …Kids with a Purpose on December 2nd to raise funds for The Autoimmune Encephalitis Alliance. “Play it FWD” will be an annual live music event with the purpose to support a nonprofit organization of the students’ choice …
We are honored to have friends at the Encephalitis Society in the UK, who provide support for the community of people who have experienced all types of encephalitis. Chief Executive, Dr. Ava Easton, has recently published an article entitled “Treating encephalitis in primary care settings” in the Independent Nurse. She provided a summary of the …
Physicians conducting research in Barcelona are using high-resolution microscopy and biochemical methods to unlock the secrets surrounding how anti-NMDA receptor antibodies cause disruption at the cellular level, resulting in the alteration of brain function. Dalmau and colleagues have discovered that under laboratory conditions, “NMDARs form nano-objects on the neuronal surface.” Patients with AE have developed …
I remember thinking when this year began that things were finally coming together for the Scheinert girls, who have had no shortage of ups and downs. My mom, two sisters, and I have been through it all together. I was diagnosed with Juvenile Rheumatoid Arthritis before I could walk, and a variety of other autoimmune …
Although a majority of patients with anti-NMDA receptor encephalitis make a good recovery, it can take time for patients to recover. Physicians are often looking for objective means to assess a patient’s recovery and ways to monitor for relapses. Researchers at Northwestern and Massachusetts General recently published a case study in which they used a …
Researchers recently released a study in the journal Brain, in which they revealed interesting discoveries about the subtypes of AE associated with LGI1 and CASPR2 antibodies. There is clinical overlap between these two syndromes and, although rare, some patients present with both types of antibodies. These types of AE often present in males, typically in …
In the Summer of 2017, I was a 46-year old mom of two young children, working part time as an attorney, just returning from a weekend away with my girlfriends. I was having difficulty sleeping, but often had insomnia this time of year. My thoughts were becoming jumbled and weren’t making sense. Little did I …
Physicians from centers in four countries collaborated on a recent retrospective study concerning the use of mycophenolate mofetil (Cell Cept) in autoimmune/immune-mediated diseases of the central nervous system in children. A large percentage of the study population were children with autoimmune encephalitis. The authors were interested in the safety of the medication and whether children …
The AE Alliance is excited to announce a groundbreaking symposium titled: “Autoimmune Encephalitis: A Bridge Between Neurology and Psychiatry.” HESA (Hashimoto’s Encephalopathy SREAT Alliance) is the initiator and lead organizer of this symposium to be held on April 6, 2019 at Weill Cornell Medical School, Cornell University in New York, NY. The April 2019 symposium for doctors …
I remember so well the day I came back into consciousness in July 2017 in Washington. I was lying in a hospital bed, President Trump making a speech on TV, and ‘Get Well’ balloons on my left. First thought was, why am I here? And second was, isn’t Obama the U.S President? Shortly after, my …
