Tuberous sclerosis complex (TSC) is a genetic disorder that causes tumors to form in many different organs, primarily in the brain, eyes, heart, kidney, skin, and lungs. Despite its complexity, understanding this condition can be a source of hope, strength, and empowerment throughout life’s stages.

Some people live with few symptoms while others need continual support. Many people with TSC live independent, healthy lives and enjoy challenging professions such as medicine, law, education and research. The TSC journey is unique to each individual and family – even siblings and identical twins can have different experiences.

Too often, TSC goes undiagnosed. But we know at least two babies born each day in the United States will have it. Nearly one million people worldwide are estimated to be living with TSC, with approximately 50,000 in the United States.

Most people with TSC will live a normal life span. Although there is no cure, there is hope. Research has proven that early diagnosis and intervention(s) are key for optimizing long-term outcomes. Advancements in research continue to deliver new and improved therapeutic options.

Reviewed by Ashley Pounders, MSN, FNP-C, November 2023.

Thank you to our TSC Navigator supporters:

Northstar Sponsors

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Cardinal Sponsors

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Directional Sponsor

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