Jill Woodworth

This is the full-length audio recording of our TSC Talks hosted, Facebook Live conversation on this topic. Brooke Alisha is an adult and parent living with TSC and Jill Woodworth, the host of TSC Talks, is a parent to several offspring living with Tuberous Sclerosis Complex. They are talking about the extreme behavioral and mental health challenges of TSC and similar conditions that include a neuropsychiatric component. The weight on the family and ripple effect on relationships can be devastating. Managing care across a lifetime requires exceptional measures of coordination and communication for which parents/families are not prepared. The individual and/or parent/caregiver becomes quite knowledgeable but is put in positions no individual, parent or family should be in making high-level medical decisions on a daily basis in crisis laden situations. Our systems of care have become akin to a "Tower of Babel" and TSC care often exposes these broken and siloed systems. Tuberous Sclerosis Complex is a genetic con