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: 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: 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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