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Beginning Your Journey

Prognosis

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. There are now four (4) FDA approved treatments in the United States available for some aspects of the disease or related conditions. These approved options are Afinitor® (everolimus), Sabril®, Vigadrone® (vigabatrin), and Epidiolex® (cannabidiol).

After allowing time to process the initial diagnosis of TSC, you can start navigating options with your healthcare team to achieve your treatment goals. Understanding all your treatment options at every stage of your journey is essential. Depending on your diagnosis, a clinical trial may be an option. Our Support Navigators can help you identify treatment options and clinical trials that may be right for you.

Another way to get informed is with TSC Academy, an online educational platform created for the tuberous sclerosis complex (TSC) community. The platform features lessons about the basic, preclinical, and clinical science of TSC, how research helps us understand and treat the disease, how the TSC Alliance, federal, state, and local government, and other stakeholders work together to find a cure, and how you play a role. You can learn more here by enrolling today to see our latest courses.