Patient Comments: Klippel-Trenaunay-Weber Syndrome - Personal Experience

Please describe your experience with Klippel-Trenaunay-Weber syndrome.

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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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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Klippel-Trenaunay-Weber Syndrome - Prognosis Question: What is the prognosis for Klippel-Trenaunay-Weber syndrome in you or a relative? How do you manage your symptoms?

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