Tuberous sclerosis

Injury	Disease	Nutrition	Poison

Symptoms	Surgery	Test	Special Topic

Tuberous sclerosis, angiofibromas - face

Tuberous sclerosis, hypopigmented macule

Tuberous sclerosis

Alternative Names:

Adenoma sebaceum
Treatment:

There is no specific treatment for tuberous sclerosis. Treatment is tailored to the symptoms. Medications are required for controlling seizures, which is often difficult. 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.

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Heart tumors called rhabdomyomas commonly disappear after puberty so surgery is usually not necessary. Regular ultrasound of kidneys is important screening for adults to make that sure tumors do not grow.

Support Groups:

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

Expectations (prognosis):

Children with mild tuberous sclerosis usually do well. Occasionally, a severely affected child will be 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.

Complications:

severe mental retardation
brain tumors (astrocytoma)
uncontrollable seizures
rhabdomyoma of the heart

Calling your health care provider:

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.