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NINDS Klippel-Trenaunay Syndrome (KTS) Information Page

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What is Klippel-Trenaunay Syndrome (KTS)?

Klippel-Trenaunay syndrome (KTS) is a congenital circulatory disorder characterized by hemangiomas (abnormal benign growths on the skin consisting of masses of blood vessels), arteriovenous abscesses, and varicose veins, usually on the limbs. The affected limbs may be enlarged and warmer than normal. Fused toes or fingers, or extra toes or fingers, may be present. Bleeding may occur, often as a result of a rectal or vaginal tumor. The cause of the disorder is unknown. A similar port-wine stain disorder in which individuals have vascular anomalies and limb enlargement is Sturge-Weber syndrome. These patients may experience seizures and mental deficiency.

Is there any treatment?

There is no cure for KTS. Treatment is symptomatic. Laser surgery can diminish or erase some skin lesions. Surgery may correct discrepancies in limb size, but orthopedic devices may be more appropriate.

What is the prognosis?

KTS is a progressive disorder, and complications may be life-threatening.

What research is being done?

The NINDS supports research on congenital disorders such as KTS with the goal of finding new means to treat and prevent them.

NIH Patient Recruitment for Klippel-Trenaunay Syndrome (KTS) Clinical Trials

Organizations

Vascular Birthmarks Foundation
P.O. Box 106
Latham, NY   12110
hvbf@aol.com
http://birthmark.org
Tel: 877-VBF-4646 (823-4646)

 Sturge-Weber Foundation
P.O. Box 418
Mt. Freedom, NJ   07970
SWF@sturge-weber.com
http://www.sturge-weber.com
Tel: 973-895-4445 800-627-5482
Fax: 973-895-4846
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

  


Prepared by:
Office of Communications and Public Liaison
National Institute of Neurological Disorders and Stroke
National Institutes of Health
Bethesda, MD 20892



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Last updated July 28, 2008