TSC Talks!22 Heinä 2019

TSC Talks! Part 1; Are You Listening? Getting Real with Cecilia Pratt, TSC Case Manager & Mom

Cecilia Pratt, reached out via Facebook to share her lived experience of a TSC diagnosis in her son and former husband. She clearly depicts how it felt to receive this heavy diagnosis download in a dermatologists office, based on skin symptoms and delivered with minimal compassion and little information, back in 2005. From here they found a TS Clinic in CA , but again Cecilia was not given the answers she needed about managing TSC and was extremely discouraged. Moving from CA to Baltimore MD, she was finally able to find a clinic and team that was able to offer hope at the Kennedy Kriger Institute. In Part 1 Cecilia gives us a moving account of the inner experience of a mother continually swimming upstream and trying to stay afloat with little support while managing some of the fiercest manifestations TSC can dish out. Intractable seizures, extreme behavior challenges, and IEP non-compliance litigation are just some of the struggles she outlines over the course of these episodes. Cecilia refuses to allow these tidal waves of TSC management keep her down and her forthright accounts of her lived experience are both painful and inspiring. These episodes are powerful, particularly if you've ever felt frustrated with getting support and solid information, struggled with relationship and family misunderstanding and felt alone and isolated. Thanks, Cecilia for your willingness to share from some of your most vulnerable moments to give voice to what many of us have felt as we attempt to maintain a quality of life while dealing with the constant demands of TSC care and management.

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Jaksot(155)

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