I am an autoimmune neurologist at the Icahn School of Medicine at Mount Sinai in New York City who cares for children and adults with encephalitis. My interest in this field stems from the first patient I saw on my first day of neurology training. He was a three-year-old boy who presented with changes in behavior, subsequently found to have anti-NMDA receptor encephalitis. I vividly remember his parents asking me repeatedly about the long-term daily function and academic potential he would have after treatment, and none of us had an answer. There was so little known at that time about prognosis in this and other forms of autoimmune encephalitis.
These questions inspired me to pursue a career in the field of autoimmune neurology and drive the research that I do even today. Our group is focused on characterizing outcomes after autoimmune encephalitis and identifying clinical and biologic factors associated with these outcomes. We have been fortunate to work with groups both nationally and internationally, including leaders and members of the Autoimmune Encephalitis Alliance, to better understand the effects of autoimmune encephalitis on patients and their caregivers. We have found that individuals with autoimmune encephalitis experience high rates of misdiagnosis, and caregivers’ report great dissatisfaction with preparation for transitions from inpatient hospital to outpatient care. Individuals with autoimmune encephalitis frequently have ongoing cognitive symptoms and difficulties with age-expected tasks, which leads to negative consequences on psychosocial well-being. Importantly, many of these impairments are not adequately captured by routine neurologic assessments, so we have broadened our evaluation of recovery. Finally, and not surprisingly, we have found that autoimmune encephalitis is associated with high levels of caregiver burden.
Looking to the future, we are working to further understand the recovery process after autoimmune encephalitis, including the changes that are seen in brain structure and function. It will be important to identify factors that are associated with better outcomes so that interventions can be designed to benefit all individuals with autoimmune encephalitis.