Patient Comments: 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? Submit Your Comment

Comment from: Vivian , 55-64 Female (Patient) Published: May 14

If you tell a doctor it is an arteriovenous malformation, and then tell them that it’s called Klippel-Trenaunay-Weber syndrome, it can help them to investigate some more. I have had it all my life. I eventually managed to sustain pregnancy and have two lovely sons. I mainly had vein eruptions especially when I was younger. The lymphedema department has been of the most practical and sustainable; kind and helpful in reducing the swelling. I now wear class 2 elastic stocking, they really help to stop the blood from pooling which makes you fall over or faint. So even if you can’t find a good doctor find the lymphedema department, they will be of great help.

Comment from: marjac, 65-74 Female (Patient) Published: March 17

With Klippel-Trenaunay-Weber syndrome, I have had years of spontaneous blow outs from varicose veins, also major veins taken out, and clots in superficial veins.

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