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

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

Comment from: notsurewhatihave, 25-34 Female (Patient) Published: April 11

I have had this 'birthmark' since I was born. Doctors weren't aware of it when I was born until they had bundled me up and seen half my body normal color and half my body blackish from lack of blood flow on the left side. Well, as years went on and test after test after test, no one has ever given me a name, or an actual 'Klippel-Trenaunay-Weber syndrome is what you have.' And this is why the capillaries don't open as much or as often as a normal person my age causing me to have this port wine stained skin as they call it. I have no major parts of my body larger than the other, like some are fatter or wider. My wrist on my left side my thumbs can wrap around and overlap but on the right side they just meet. My hips are bigger on my right side than my left.

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Comment from: princess, 35-44 Female (Patient) Published: July 24

I was diagnosed with Klippel-Trenaunay-Weber syndrome (KTWS) as a child with a port wine stain on my right leg. As time has passed the condition has worsened and I was diagnosed as KTWS in 2011. It now has spread over the whole of my right side of my body. I suffer extreme pain in my arm and leg, I am yet to get any help with this, as such little is known. My general physician is great, he tries to help but is as unknowing as me on the condition. It is a scary and painful condition to have so if anyone has had any luck with getting the right help please I hope to see here.

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Comment from: Nerak25, 35-44 Female (Patient) Published: March 16

I have Klippel-Trenaunay-Weber syndrome (KTWS). I was diagnosed at 29, when I became symptomatic. It was a long tiring painful road getting to the diagnosis as well. I found it at an interventional radiologist's. I went through many procedures to close some of the deformed replicated veins. The pain is still present and my debilitating symptoms gone for now. The downside is fixing one thing is it starts another. I am so much better now I can deal with the rest. We walk a lonely road but stay positive and keep fighting.

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Comment from: angela H, 45-54 Female (Patient) Published: June 24

I have Klippel-Trenaunay-Weber syndrome (KTWS) but was never told this as a child. From age 6 to 16 I went every year to have x-rays done because one of my legs was smaller. Never was my family told I had KTWS. I was told that a lot of people live with 1 inch difference in legs and it is no big deal. It was not until a few years ago I was told that I had KTWS, because there is no pulse on my left ankle (my little leg which is the KTWS leg) with the vein collapsing. The shock that I had this all my life and never knew it! So this was why one leg is smaller over an inch than the other leg, this is why I have two different shoe sizes, this was why I have a birthmark over half my body, this was why the veins are bad in my little leg, and this was why I have big brushes that just appear. I have a rare form because it is my smaller leg not my longer leg. Nothing helped the pain when I was young. It got better as I got older but it still hurt from time to time. Heating pads are the only thing that help with the pain. I wrap my leg up in a long one. I fall down every so often like my legs just stopped working; circulation is bad as well. Now I am having issues with the pain in my foot and ankle. I post this to let others who are dealing with this know that you are not alone. I wish that people could understand it is a lot to deal with. It gets old being asked what is wrong with my leg, why I am limping. Sorry to go on and on. I would love to be part of a study if that would help others and bring a light to this rare club we are part of thanks for letting me post.

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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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Comment from: Basketjudi, 55-64 Female (Patient) Published: September 17

I am looking for a physician. Because of Klippel-Trenaunay-Weber syndrome I have had increased issues with swelling, and vascular issues recently.

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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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