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: 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: 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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