Dr. Pojen Deng and Dr. Anusha Yeshokumar (Mount Sinai Health System) discuss autoimmune encephalitis and a multidisciplinary approach to AE Care for the Psychiatric Times Health Minute. They also discuss long term management strategies, including recognition of broad psychosocial ramifications as well as individual cognitive and psychiatric sequelae. https://www.psychiatrictimes.com/view/collaborating-best-outcomes-patients-autoimmune-encephalitis
A group of doctors led by Dr. Anusha Yeshokumar have assessed care transitions and caregiver burden among caregivers of individuals with anti-NMDA receptor encephalitis (anti-NMDARE). Surveying caregivers about their experience caring for those with anti-NMDARE and their perceptions of disease progression and recovery provides a unique opportunity to assess aspects of care for patients who […]
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 […]
‘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 […]
AE Alliance is proud to be joining forces with The Anti-NMDA Receptor Encephalitis Foundation, Encephalitis 411, the Encephalitis Society, HESA, and Encephalitis Global in organizing the World Encephalitis Day 2020 Conference in Dallas, TX. The World Encephalitis Day 2020 Conference welcomes survivors and caregivers to attend and interact while celebrating World Encephalitis Day. We feel very fortunate to have […]
AE Alliance receives questions on a daily basis from patients and caregivers on diagnosis, treatment, recovery, and research. Sometimes these questions are very specific, but often they will apply to a lot of patients and caregivers. Starting in October, we will have a new segment in our newsletter: Ask the Panel. Your question will be […]
Texas Children’s Hospital will hold their AE Day of Strength on July 27 in Houston TX and you are invited to join! The AE Day of Strength will allow patients and their families to hear disease updates, discuss coping strategies and connect with other AE families. There will be special activities to honor all siblings. […]
Psychiatrists play a pivotal role in the diagnosis and treatment of AE. As psychiatric symptoms often dominate the symptoms that occur at onset of this disease, patients may present initially to a psychiatrist who are tasked with identifying abnormal features of psychosis presentations, including alterations in mental status, seizures, and dysautonomia, which may prompt consideration […]