Turbo and Scott: Raising Awareness of Tuberous Sclerosis

turbo and scott coverDo you have a child with Tuberous Sclerosis?

What is Tuberous Sclerosis (TSC)? According to the website Tuberous-Sclerosis.com, “TSC presents in the form of noncancerous tumors called hamartomas. In children, these tumors can form in most of the major parts of the body, including the brain, skin, eyes, heart, and kidneys. These tumors in the brain may also affect the way a child thinks, feels, and behaves, which may lead to symptoms such as autism and attention deficit hyperactivity disorder (ADHD)  Symptoms caused by TSC can range from mild to severe and can change over time TSC is not based on race, ethnicity, or gender. Today, TSC may occur in as many as 1 out of every 6800 live births. However, since symptoms vary and may not be immediately recognized by a health care provider, many people with TSC may not be diagnosed.”

I was contacted on behalf of Novartis regarding the resources available on their website, Tuberous Sclerosis.com. When I went to their website, I was very impressed with the amount of information and free resources available for parents, caregivers, children with TSC, adults with TSC and health care professionals. For children, the website had a plethora of resources including a free children’s ebook, videos, and other helpful information. To access these resources, click here. There is also an app available for those living with TSC to help monitor syptoms, etc. To check out the app, click here.

Part of what I love about my blog is that it gives me a platform to raise awareness and share resources with all different types of people. Although TSC is a rare disorder, it is important to know what it is, so that it can be diagnosed and treated properly. I once had a client with this diagnosis many years ago and I wish I had these resources then to help share it with the child and her family. Also, as a health care professional it is important to know about a variety of disorders that can affect our client’s cognitive, communication and other language skills.

On the Novartis’ website, there are two free e books available that can be read online or printed out as a pdf. I love that these ebooks are free and easily accessible. There is a TSC: Turbo and Scott storybook available on the website here that is geared towards younger children with TSC. The Turbo and Scott storybook takes the reader through how Scott was first diagnosed with TSC and the different symptoms that occurred. This free storybook presents TSC in a way that children can understand without it being over complicated. Within the story, a child new vocabulary related to TSC which can help improve understanding it when discussing the disorder. This storybook is also well illustrated, which makes it easy for a child to engage in the story.

turbo scott 3

Turbo and Scott comic book is geared towards older children and teens 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.

To access the Turbo and Scott comic book click here.

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:

kari lutherWhy/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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