See some advice from people with experience in Klippel-Trénaunay-Weber Syndrome to people who have just been diagnosed with Klippel-Trénaunay-Weber Syndrome

▷ Which advice would you give to someone who has just been diagnosed with Klippel-Trénaunay-Weber Syndrome?

Stories of Klippel-Trénaunay-Weber Syndrome

KLIPPEL-TRÉNAUNAY-WEBER SYNDROME STORIES

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Klippel-Trénaunay-Weber Syndrome stories

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 ...

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1/13/16, 4:42 AM by monet

DIAGNOSED AT 3 MONTHS OLD IN 1982.

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1/17/16, 8:07 PM by Tegan

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,...

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1/16/16, 4:35 PM by Alexis

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 panicking. ...

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10/21/16, 6:25 AM by [email protected]

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 get ulcer...

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5/20/17, 11:16 PM by MB

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Klippel-Trénaunay-Weber Syndrome forum

KLIPPEL-TRÉNAUNAY-WEBER SYNDROME FORUM

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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

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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...

Which advice would you give to someone who has just been diagnosed with Klippel-Trénaunay-Weber Syndrome?