Jill Woodworth

In this episode Rebecca shares her challenging experiences and incredible advocacy as a TSC Mom, getting an accurate diagnosis of certain TSC manifestations such as seizures, including infantile spasms and autism spectrum disorder. She gives multiple examples of how frustrating managing TSC can be when there are multiple disconnects among doctors and other professionals, even at the same institution, to whom we must turn for help. Rebecca's perseverance in the face of incredulous situations is phenomenal. She also dips into the family impact, coping and her writing. The depth and quality of REbecca's poignant and eloquent writing helps us see the reality of living with both joy and sorrow, on a daily basis, inherent in the TSC journey