Long-term outcomes study in autoimmune encephalitis
Dr. Anusha Yekoshumar of the Icahn School of Medicine at Mount Sinai Hospital in New York City. 2018
The Autoimmune Encephalitis Alliance is participating in a study to better understand the challenges AE survivors face during recovery and in the years following diagnosis. There is a survey designed for caregivers as well, which will provide useful information to researchers. We hear from many patients who are facing ongoing struggles to return to life as “normal” and caregivers desiring to help their loved ones recover. We hope this study will shed new light on the needs in this area and lead to advances in rehabilitation that will ultimately benefit patients and caregivers.
The idea for this research arose as it has become clear many patients are still struggling with various types of challenges several years later including fatigue, cognitive symptoms (such as memory and concentration), and emotional symptoms. These issues may be overlooked in a standard neurological exam. A study about the subject was published in late 2017. The abstract may be viewed here.