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Congenital Skin Disorder

02/13/2001 08:18AM


Do you have any information on a congenital birth defect known as Trenaway Webber? I am not sure on the spelling . It is a hardening of the skin.


The disorder you may be asking about is known as Klippel-Trenaunay syndrome or sometimes called Klippel-Trenaunay-Weber syndrome.

K-T syndrome is a fairly rare congenital problem that includes specific types of birth marks called port wine stains or cutaneous capillary malformations and hypertrophy (excessive overgrowth) of soft tissue or bone – usually seen in a limb (foot, leg, arm or hand). People with K-T syndrome can also have what is known as venous malformations or lymphatic abnormalities.

I am not aware of these patients having hardening of the skin with this syndrome. Perhaps you are thinking of the overgrowth that can occur –

The specific cause is not known at this time. It usually is NOT inherited.

There is a very good website and support group (see below) for families that have K-T syndrome. If you have additional questions, you might ask your doctor for a referral to a genetic counselor or geneticist to disucss this in detail. You can find a genetics center near you at the National Society of Genetic Counselors website below.

For more information:

National Society of Genetic Counselors
The Klippel-Trenaunay Syndrome Support Group

Response by:

Case Western Reserve University Anne Matthews, R.N., Ph.D.
Director, Genetic Counseling and Family Studies

Center for Human Genetics

School of Medicine

Case Western Reserve University

Anne   Matthews, R.N., Ph.D.