Kids Books: Turbo and Scott Storybook on Tuberous Sclerosis (TSC)

A young boy holds a teddy bear while a young girl holds an orange cat toy.

Do you have a child with Tuberous Sclerosis (TSC)?

I wanted to share an excellent and free eBook that can very helpful for those families whose children are diagnosed with TSC.

On the Novartis’ website, there are a free ebooks available that can be read online or printed out as a pdf. There is a TSC: Turbo and Scott Graphic Novel available on the website here that is geared towards teens and young adults diagnosed with TSC. The comic book takes you through the life of Scott who is a teen living with TSC. The book begins with the main character, Scott having a conversation with a friend on the computer who also TSC. His mom notifies Scott of an email that he received regarding an opportunity to speak at the TSC conference. Scott is nervous but excited. Getting the email regarding the speech helps him reflect on his journey with TSC and how he continues to grow and learn from it. It shows the support that Scott gets from his family and others in the TSC community. It also shows that although Scott struggles with TSC, he could still be a typical teenager who goes to parties and has fun with his friends. The main character in the story helps provide an excellent role model for others who are struggling with the symptoms. The comic book is appropriate for older children, teens, adults and especially health care professionals to help build awareness and teach others about TSC.

Scott stands before a clapping audience as they cheer "Whoo!

Given that the symptoms and severity of TSC vary, I wanted to interview the president and CEO of the Tuberous Sclerosis Alliance, Kari Luther Rosbeck:

Why/how will Turbo & Scott help a teen with TSC or their family?

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

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Kids Books: Turbo and Scott Storybook on Tuberous Sclerosis (TSC)

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