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Reproductive-Aged Adults Diagnosed With Tuberous Sclerosis Complex (Tsc): Understanding Of Clinical Variability, Perceived Disease Burden, And Reproductive Decision-Making, Diane L. Biederman

Theses and Dissertations

Tuberous Sclerosis Complex (TSC) is a highly variable autosomal dominant multisystem disorder characterized by the growth of benign tumors, epilepsy, and TSC- associated neuropsychiatric disorders (TAND). There is a high level of clinical variability, even within the same family. While reproductive decisions always carry a level of uncertainty, individuals with highly variable genetic conditions like TSC must consider both the chance of passing on the condition and the uncertain clinical presentation. There is currently no literature on factors influencing reproductive decisions of adults with TSC. To address this gap in understanding, we conducted an exploratory mixed-methods survey utilizing an anonymous …