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Tuberous Sclerosis

Home > Illnesses and Disabilities Home > Types of Illnesses & Disabilities > Tuberous Sclerosis

Tuberous sclerosis (TSC) is a rare disease caused by a gene mutation. The gene mutation can be passed down in a family or it can develop on its own. TSC causes tumors to grow in the brain and other organs. The tumors are not cancer. But tumors can cause problems depending on their location. Some symptoms include:

• seizures
• problems with thinking and learning
• behavioral problems (including aggression, acting out, or self-harming behavior)
• skin problems (such as white patches anywhere on the body or raised, discolored areas on the forehead)
• kidney disease

Although TSC may be present at birth, full symptoms may take some time to develop. As a result, TSC is often overlooked or misdiagnosed for years. TSC is mild in some people. But for others, TSC can be very debilitating and even life-threatening.

TSC has no cure. But treatments can help many of the symptoms and help people with more severe TSC cope with its debilitating effects.

Additional Resources

Publications

1.   NINDS Tuberous Sclerosis Information Page - This on-line publication contains information on Tuberous Sclerosis treatment, and types of research being done. Tuberous sclerosis is a rare genetic, neurological disorder primarily characterized by seizures, mental retardation, and skin and eye lesions.

   http://www.ninds.nih.gov/disorders/tuberous_sclerosis/tuberous_sclerosis.htm

2.   Tuberous sclerosis - This publication explains what tuberous sclerosis is and gives information on the causes, incidences, risk factors, symptoms, prognosis, and complications.

   http://www.nlm.nih.gov/medlineplus/ency/article/000787.htm

3. About Tuberous Sclerosis Complex (Copyright © The Tuberous Sclerosis Alliance) - This publication explains what tuberous sclerosis complex is, provides information on the genetics and symptoms of the disease, answers several common questions, and gives information on living with the disease.

   http://www.tsalliance.org/pages.aspx?content=2

4.   Accepting the Diagnosis of Tuberous Sclerosis Complex (Copyright © The Tuberous Sclerosis Alliance) - This fact sheet explains why it may be difficult for a family to accept a diagnosis of tuberous sclerosis. It also discusses whether or not you should tell your child that he or she has been diagnosed with this disease.

   http://www.tsalliance.org/Fact%20Sheets/accepting%20the%20diagnosis.pdf

5. Tuberous Sclerosis and Your Baby (Copyright © AAFP) - This publication briefly explains what tuberous sclerosis is, what the signs are, and how the symptoms are treated.

   http://familydoctor.org/496.xml

6.   Warning Signs in Tuberous Sclerosis (Copyright © The Tuberous Sclerosis Alliance) - This fact sheet lists some of the symptoms that may be warning signs for larger problems in people with tuberous sclerosis.

   http://www.tsalliance.org/Fact%20Sheets/warningsigns.pdf

Organizations

1.   National Institute of Neurological Disorders and Stroke, NIH, HHS
2. National Organization for Rare Disorders
3. Tuberous Sclerosis Alliance

= Indicates Federal Resources

Content last updated May 15, 2008.