World map of Klippel-Trénaunay-Weber Syndrome


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Klippel-Trénaunay-Weber Syndrome stories


THE WAY I WAS BORN WITH KTWS


Hi my name is Monet Pavey, i am 11 yrs old and was born with ktws. It affects my left leg. i am lucky as both of my legs are the same size. i wear a compression badage during the day to keep me safe from bleeding and the swelling down. The pain is a ...

Views: 1213 Jan 13, 2016, 4:42 AM by monet

ALEXIS'S STORY


I was diagnosed with KTW from 3 days old. The whole right side of my body is affected along with one of my fingers and one of my toes on the left side of my body. My whole body suffers from Deep Vein Thrombosis and superficial thrombosis, lymphedema,...

Views: 629 Jan 16, 2016, 4:35 PM by Alexis

DIAGNOSED AT 3 MONTHS OLD IN 1982.


Views: 620 Jan 17, 2016, 8:07 PM by Tegan

IAN'S DAY OF BIRTH


Ian is my 12 year old son who was born with KTS.  We live in a very small town in Northwestern Minnesota. The Drs here have never heard or seen anything about this syndrome ever. The doctor was so concerned about it that he was actually panicki...

Views: 584 Oct 21, 2016, 6:25 AM by Jenlouise40@yahoo.com

BORN WITH KTS/KTW


I'm almost 40 years old.  KT affects both legs and feet and the left arm and hand. It has caused compensatory scoliosis and I have a hump on my back.  I'm a woman and I wear a size 16 men's shoe (15 on the right foot). It's painful, I g...

Views: 448 May 20, 2017, 11:16 PM by MB

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Klippel-Trénaunay-Weber Syndrome forum


BURNING


I am 51 years old and have KTS with port wine stain, left arm, chest, hand. It feels like it is on fire the last few days. I havent had any relief not any physicians around to treat it. anyone else have this issue before

Views: 403 Aug 25, 2017, 4:58 PM by Amy

BRUISED CLOT


I was wondering if anyone has ever experienced a blood clot that has a certain place on your body where it comes and goes and if that particular clot showed signs of or became a bruise? And if so whether the blood clot stayed in place for longer than...

Views: 385 Jan 11, 2016, 7:12 AM by Valerie

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