Down Syndrome Regression Disorder (DSRD) is a rare neurocognitive disorder where otherwise healthy individuals with Down syndrome develop insomnia, catatonia, mutism, aggression, delusions, hallucinations, obsessive compulsive tendencies, and encephalopathy (being “out of it”) over a period of a few days to weeks. The cause of this condition is unknown but cutting edge research has identified a potential link to the immune system. Dr. Santoro will review the common symptoms of this condition and report on some of the new treatments for this in addition to discussion a new clinical trial opening in early 2023. Following Dr. Santoro’s presentation, Debbie Levy will share her family’s journey to finding a diagnosis of DSRD and treatment for her 14-year-old daughter and how her daughter is today. Debbie will discuss how DSRD has affected her family and resources she found helpful.
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