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Tuberous sclerosis is a neurocutaneous disorder. The condition causes benign (noncancerous) growths called tubers to appear in the brain and on other organs, including the eyes, kidneys, heart, lungs and skin. Tuberous sclerosis affects 1 in 6,000 births and is usually first diagnosed in childhood. There is no racial or gender predisposition to the disorder. It affects between 25,000 and 40,000 Americans and about 1 to 2 million people worldwide.
Children diagnosed with tuberous sclerosis share three common findings: small bumps on the skin of the nose and face called sebaceous adenomas, uncontrolled epilepsy and developmental delay. Noncancerous tumors such as subependymal nodules (SENs) and subependymal giant cell astrocytomas (SEGAs) may occur in the brain, in addition to other growths called cortical tubers. These growths may cause problems with normal brain function.
Tuberous sclerosis is part of a group of multisystem disorders that involve the central nervous system. Related conditions include:
Tuberous sclerosis is a genetic condition. Mutations on two genes (TSC1 and TSC2) on chromosomes 9 and 16, respectively, cause the condition. The disorder is autosomal dominant, meaning only one of the two gene mutations needs to be present for tuberous sclerosis to occur. A child has a 50 percent chance of inheriting the condition if one parent also has tuberous sclerosis. Tuberous sclerosis rarely develops through spontaneous genetic mutations.
With early treatment and monitoring, life expectancy for children with tuberous sclerosis is usually good. Lifelong monitoring is necessary to watch for any possible negative effects of tumors in the central nervous system and other organ systems.
Doctors at Riley at IU Health first examine your child for the three common findings of tuberous sclerosis: sebaceous adenomas, intractable epilepsy and developmental delay. Other diagnostic tests include:
While there is no cure for tuberous sclerosis, treatments are available to address and reduce symptoms. Treatment options include:
Riley at IU Health offers a broad range of supportive services to make life better for families who choose us for their children's care.
This National Institutes of Health website provides more information about the diagnosis and treatment of tuberous sclerosis.
This national nonprofit provides an overview of tuberous sclerosis and offers links to investigational treatments.
In addition to our primary hospital location at the Academic Health Center in Indianapolis, IN, we have convenient locations to better serve our communities throughout the state.
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