Klippel-Trenaunay-Weber Syndrome - Personal Experience

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What is Klippel-Trènaunay-Weber (KTW) syndrome?

Klippel-Trènaunay-Weber (KTW) syndrome is a condition characterized by a triad of findings:

  • Port-wine stain or "birthmark" (capillary malformations in the skin)
  • Soft tissue and bony hypertrophy (excessive growth of the soft tissue and/or bones) most often involving a single limb.
  • Vascular anomalies such as varicose veins.
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See what others are saying

Comment from: Crystal, 25-34 Female (Patient) Published: April 08

I have had Klippel-Trenaunay-Weber syndrome since I was diagnosed as a child. I have been frequently told that it shouldn"t bother me but the pain has always been there. It has gotten worse as I"ve gotten older and I"m so tired of hurting. It swells so there are bumps on my leg and it will randomly quit supporting me as I walk or stand.

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Comment from: JessC, 25-34 Female (Patient) Published: February 10

I was born with KTPWS (Klippel-Trenaunay-Parkes-Weber syndrome) and diagnosed at the age of 5 years old. I have suffered through pain my entire life and as I get older the pain has gotten worse. I have muscle detrition in my leg and I have yet been able to find a doctor who is knowledgeable or can treat my disease. Each year my pain gets worse, swelling gets worse, etc. It's making it difficult keeping up with my children.

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