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Tuberous sclerosis

• More information on tuberous sclerosis

Tuberous sclerosis (TOO-buh-ruhss skluh-ROH-suhss) (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.

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More information on tuberous sclerosis

Explore other publications and websites

• About Tuberous Sclerosis Complex (Copyright © 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
• Living With Tuberous Sclerosis Complex (Copyright © Tuberous Sclerosis Alliance) — This website includes resources and information for individuals with tuberous sclerosis. It discusses issues such as education, family support, financial planning, and more.
  http://www.tsalliance.org/pages.aspx?content=11
• NINDS Tuberous Sclerosis Information Page — This online publication provides information on treatment of and research on tuberous sclerosis.
  http://www.ninds.nih.gov/disorders/tuberous_sclerosis/tuberous_sclerosis.htm
• Reproductive Decision Making and Tuberous Sclerosis Complex (Copyright © Tuberous Sclerosis Alliance) — This publication explains the risks of passing on the gene for tuberous sclerosis, and how you can work with your doctor to stay healthy during and after pregnancy. It also discusses alternative ways of starting a family, such as adoption, surrogacy, and egg and/or sperm donation.
  http://www.tsalliance.org/documents/Reproductive%20Decision%20Making%20and%20TSC.pdf
• Tuberous Sclerosis — This publication explains what tuberous sclerosis is and gives information on the causes, incidence, risk factors, symptoms, prognosis, and complications.
  http://www.nlm.nih.gov/medlineplus/ency/article/000787.htm
• Tuberous Sclerosis (Copyright © American Academy of Family Physicians) — This publication briefly explains what tuberous sclerosis is, what the signs are, and how the symptoms are treated.
  http://familydoctor.org/online/famdocen/home/children/parents/special/birth/496.html

Connect with other organizations

• National Institute of Neurological Disorders and Stroke, NIH, HHS
  http://www.ninds.nih.gov/
• National Organization for Rare Disorders
  http://www.rarediseases.org/
• Tuberous Sclerosis Alliance
  http://www.tsalliance.org

Content last updated September 22, 2009.

Resources last updated September 22, 2009.

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