Klippel Trenaunay Weber Syndrome

The story of Lucy

My name is Lucy , I’m 13 and when I was 9 I was diagnosed with Klippel Trenaunay Weber Syndrome and Hemihyperplasia , this means my lymphatic system , bones and vains were not formed correctly and also one side of my body grows at a faster rate than the other , I have a port wine stain which is a birthmark all over my body I get laser surgery on and I also have metal plates in my knees to help me walk.

 

Find others with Klippel-Trénaunay-Weber syndrome on RareConnect, the online platform for people affected by rare disease

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