Beginning Your Journey

Understanding the Diagnosis

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. TSC is a complicated disease. 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. Understanding the disease will give you hope, strength, and empowerment through all life stages.

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.