NINDS Tuberous Sclerosis Information Page

There is no cure for TSC, although treatment is available for a number of the symptoms. Antiepileptic drugs may be used to control seizures and medications may be prescribed for behavior problems. Intervention programs, including special schooling and occupational therapy, may benefit individuals with special needs and developmental issues. Surgery, including dermabrasion and laser treatment, may be useful for treatment of skin lesions. Because TSC is a lifelong condition, individuals need to be regularly monitored by a doctor.  Due to the many varied symptoms of TSC, care by a clinician experienced with the disorder is recommended.

The prognosis for individuals with TSC depends on the severity of symptoms.   Individuals with mild symptoms generally do well and live long productive lives, while individuals with the more severe form may have serious disabilities.  In rare cases, seizures, infections, or tumors in vital organs such as the kidneys and brain can lead to severe complications and even death. However, with appropriate medical care, most individuals with the disorder can look forward to normal life expectancy.

The National Institute of Neurological Disorders and Stroke (NINDS) conducts TSC research in its laboratories at the National Institutes of Health (NIH) and also supports TSC research through grants to major medical institutions across the country.  Scientists in one study are learning more about the genes that can cause TSC and the function of the proteins those genes produce.  Another study focuses on two major brain disorders --autism and epilepsy -- that occur in children with TSC. Other scientists are trying to determine what causes skin tumors to develop in individuals with TSC and to find the molecular basis of these tumors.  Scientists hope knowledge gained from their current research will improve the genetic test for TSC and lead to new avenues of treatment, methods of prevention, and, ultimately, a cure.