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  Tuberous Sclerosis 
  
Reviewed  07-01-2001  

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What is Tuberous Sclerosis?
Is there any treatment?
What is the prognosis?
What research is being done?

Organizations
Related NINDS Publications and Information
Additional resources from MEDLINEplus

What is Tuberous Sclerosis?
Tuberous sclerosis is a rare genetic, neurological disorder primarily characterized by seizures, mental retardation, and skin and eye lesions. In some cases, neurobehavioral problems may also occur. Individuals with tuberous sclerosis may experience none or all of the symptoms with varying degrees of severity. Tuberous sclerosis is a multi-system disease that can affect the brain, kidneys, heart, eyes, lungs, and other organs. Small benign tumors may grow on the face and eyes, as well as in the brain, kidneys, and other organs. Neuroimaging studies may be able to confirm the diagnosis. Seizures most often begin in the first year of life.

Is there any treatment?
There is no specific treatment for tuberous sclerosis. Treatment is symptomatic and may include anticonvulsant therapy for seizures; dermabrasion and laser removal techniques for the skin manifestations; drug therapy for neurobehavioral problems; treatment of high blood pressure caused by the kidney problems; and surgery to remove growing tumors.

What is the prognosis?
The prognosis for individuals with tuberous sclerosis varies depending on the severity of symptoms. There is no cure.

What research is being done?
The NINDS supports research on genetic disorders such as tuberous sclerosis aimed at increasing scientific understanding of these disorders and finding ways to prevent, treat, and cure them.

Select this link to view a list of studies currently seeking patients.

 Organizations

Epilepsy Foundation
4351 Garden City Drive
Suite 500
Landover, MD 20785-7223
postmaster@efa.org
http://www.epilepsyfoundation.org
Tel: 301-459-3700 800-EFA-1000 (332-1000)
Fax: 301-577-2684

National Organization for Rare Disorders (NORD)
P.O. Box 1968
(55 Kenosia Avenue)
Danbury, CT 06813-1968
orphan@rarediseases.org
http://www.rarediseases.org
Tel: 203-744-0100 Voice Mail 800-999-NORD (6673)
Fax: 203-798-2291

Tuberous Sclerosis Alliance
801 Roeder Road
Suite 750
Silver Spring, MD 20910-4467
info@tsalliance.org
http://www.tsalliance.org
Tel: 301-562-9890 800-225-6872
Fax: 301-562-9870

Related NINDS Publications and Information

  • Tuberous Sclerosis Fact Sheet

  • Tuberous Sclerosis fact sheet developed by the National Institute of Neurological Disorders and Stroke (NINDS).


    NINDS health-related material is provided for information purposes only and does not necessarily represent endorsement by or an official position of the National Institute of Neurological Disorders and Stroke or any other Federal agency. Advice on the treatment or care of an individual patient should be obtained through consultation with a physician who has examined that patient or is familiar with that patient's medical history.

    All NINDS-prepared information is in the public domain and may be freely copied. Credit to the NINDS or the NIH is appreciated.


    Provided by:
    The National Institute of Neurological Disorders and Stroke
    National Institutes of Health
    Bethesda, MD 20892




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