Kids Books: Turbo and Scott Storybook on Tuberous Sclerosis (TSC)
Turbo & Scott’s comic book format offers difficult-to-explain information in a non-threatening and engaging format. For example, the comic demonstrates that no two people with TSC are exactly alike in the way the disease manifests. Moreover, it goes into some detail about the importance of getting proper treatment as well as peer support.
Why do you think Turbo & Scott will resonate with the TSC community?I think Turbo & Scott will resonate with the TSC community because Scott shows the world that someone with tuberous sclerosis complex can have the same hopes and dreams as any other person – they can have friends, they can further their education, and they can strive for a career in adulthood.
What should people know about TSC?
Tuberous sclerosis complex (TSC) is genetic disorder that causes tumors to form in the vital organs, including the brain, heart, eyes, skin, kidneys, liver and lungs; it’s also the leading genetic cause of both epilepsy and autism. As I mentioned earlier, TSC affects everyone differently and as people with TSC age, new challenges can arise. It’s very important that individuals with TSC get diagnosed as quickly as possible and follow the TSC Clinical Consensus guidelines for recommended testing and treatment. Recent TSC research is showing incredible promise for better understanding the disease and potential new ways to treat it. So while TSC is very serious and we still have much work to do, there truly is hope on the horizon.
What is the TSC patient/caregiver experience like?
Caregivers and individuals with TSC arm themselves with information and they rely on peer support. The journey can often be complicated and challenging. They attend community, regional, and world patient conferences in order to stay updated on research and treatment options. They are the best advocate for themselves or their child. This often takes tenacity, determination and an extraordinary amount of patience. As a community, they band together to create hope for the future, to fund research and to fight for federal research dollars. Together, they have created tremendous change over the past four decades