Tuberous sclerosis

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Tuberous sclerosis, angiofibromas - face

Tuberous sclerosis, hypopigmented macule

Adenoma sebaceum

There is no specific treatment for tuberous sclerosis. Treatment is specific to the symptoms. Medications are required for controlling seizures, which is often difficult. The need for special schooling or care is determined by the severity of mental retardation.

Adenoma sebaceum (small growths) on the face may be removed by laser treatment. These lesions tend to recur and repeat treatments will be necessary.

Rhabdomyomas commonly disappear after puberty, so surgery is usually not necessary. Regular ultrasound checks of the kidneys are an important screening tool for adults, to make sure there is no tumor growth.

For additional information and resources, contact the Tuberous Sclerosis Alliance at 800-225-6872.

Children with mild tuberous sclerosis usually do well. Occasionally, when a severely affected child is born, the parents are examined, and one of them is found to have had a mild case of tuberous sclerosis that escaped detection.

Children with profound retardation or uncontrollable seizures usually do poorly. Although numerous benign tumors occur in this disease, some, such as renal or brain tumors, can become malignant.

• Severe mental retardation
• Brain tumors (astrocytoma)
• Uncontrollable seizures
• Rhabdomyoma of the heart

Notify your health care provider if either side of the family has a history of tuberous sclerosis. Since tuberous sclerosis also appears as a spontaneous mutation, call your health care provider if you notice symptoms suggestive of tuberous sclerosis in your child. Call a geneticist if your child is diagnosed with cardiac rhabdomyoma, as tuberous sclerosis is the leading cause of this tumor.

Review Date: 08/11/2006
Reviewed By: Brian Kirmse, MD, Mount Sinai School of Medicine, Department of Human Genetics, New York, NY. Review provided by VeriMed Healthcare Network.