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 doctors led by Dr. Anusha Yeshokumar has assessed the long-term impact of anti-NMDA receptor encephalitis (anti-NMDARE) on psychosocial outcomes, or emotional and social well-being. Adolescents and adults with self-reported anti-NMDARE were invited to complete an online survey distributed by the Autoimmune Encephalitis Alliance and the Encephalitis Society in 2018. The survey was …
Dr. Sean Pittock and his group at Mayo Clinic Rochester recently completed a clinical trial that was co-sponsored by the AE Alliance. The study evaluated IVIG treatment in patients with autoimmune epilepsy who fail to benefit from standard epilepsy medications and/or for those where corticosteroids are not considered a treatment option. Last week, in a …
AE Family and Friends, Our hearts are filled with gratitude for your extraordinary efforts yesterday, contributing to our Research Network and spreading the word to your families, friends, and colleagues about this significant opportunity to invest in AE research through the Alliance. We set a $10,000 goal at the beginning of the campaign, and we …
This morning we posted a video of Dr. Heather Van Mater on our social media, where she talks about a registry as an area of opportunity to advance AE Research. But what is a registry? Rare diseases present unique challenges for researchers and companies working towards treatments and cures; small and scattered patient populations, difficulty …
#GivingTuesdayNow on May 5, 2020, is a global day of generosity and unity, a day to come together and give back in response to the unprecedented need caused by COVID-19. AE Alliance will participate in Giving Tuesday Now and launch the AEA Research Network with webinars by Dr. Sean Pittock (Mayo Clinic) and Dr. Stanley …
Patients with AE often require care in an ICU. A group at Johns Hopkins led by Dr. John Probasco, discusses clinical presentation, diagnostic approaches, and treatment options for AE with particular focus on the central role the intensivist plays in this process. In a retrospective study at a tertiary referral center, 55% of patients meeting …
In this nationwide cohort study, by De Bruijn and colleagues, the authors evaluated the seizure responses to immunotherapy and anti-epileptic drugs (AED’s) in patients with NMDAR, LGI1, and GABAbR encephalitis. The study included 153 patients with AE (53 LGI1, 75 NMDAR, 25 GABABR). Of those, 110 patients had epileptic seizures and were included in the …
‘What is AE?’, seems like an easy question to answer, right? AE refers to conditions where the body’s immune system, whose job is to fight infection, mistakenly attacks healthy brain cells causing neurologic and psychiatric symptoms. But what does that really mean? And what if you or a loved one gets this diagnosis and everything …
The blood-brain barrier (BBB) is a highly selective barrier formed by endothelial cells connected by tight junctions that separate circulating blood from the brain. An intact BBB prevents many micro- and macromolecules and immune cells from entering the brain in order to protect and maintain an optimal level of essential nutrients and neurotransmitters. There has …
This week the FDA approved the initiation of a phase III clinical trial of the oncology supportive care drug Tocilizumab (Actemra – Genentech) for the treatment of hospitalized adult patients with severe COVID-19 pneumonia. Tocilizumab is a humanized anti-interleukin (IL)-6 receptor monoclonal antibody, which blocks IL-6-mediated signal transduction. Given the crucial role of IL-6 in stimulating …
