Klippel-Trenaunay-Weber Syndrome Support Group
Klippel Trenaunay Weber syndrome (KTWS) is a medical condition in which blood vessels fail to form properly. Although the cause and processes surrounding KTWS are poorly understood, the disease is diagnosed by the presence of at least two of the symptoms on a single extremity: A distinctive port-wine stain with sharp borders, Varicose veins, Hypertrophy of bony and soft...
Hello,
Im a 27 year old girl from Europe and I would love to talk to people who have KTWS. I was diagnosed since my birth but in my country there is not that much knowledge about the syndrome. I would love to talk to other people who has KTWS and how they deal with it in daily life, how they deal with the pains and if they had any helpful surgery.
I have never seen KTWS as a great obstacle in my life but as I get older I realise more and more that HOW I do my daily things and HOW I deal with the pain and everything it, is far from "normal".
It would mean a lot to me, since I can not really talk about KTWS with my friends and I realise it would be good for me to talk to people who knows what it is to have KTWS.
If you feel like mailing or skyping with me, it would be very much appreciated. You can contact me through; talktozinzi@hotmail.com
Im a 27 year old girl from Europe and I would love to talk to people who have KTWS. I was diagnosed since my birth but in my country there is not that much knowledge about the syndrome. I would love to talk to other people who has KTWS and how they deal with it in daily life, how they deal with the pains and if they had any helpful surgery.
I have never seen KTWS as a great obstacle in my life but as I get older I realise more and more that HOW I do my daily things and HOW I deal with the pain and everything it, is far from "normal".
It would mean a lot to me, since I can not really talk about KTWS with my friends and I realise it would be good for me to talk to people who knows what it is to have KTWS.
If you feel like mailing or skyping with me, it would be very much appreciated. You can contact me through; talktozinzi@hotmail.com
deleted_user
It is hard to live with KTWS. It can be done. I do understand it not something your friends can understand. It is so rare to find a woman with this. If you need to talk email me.
deleted_user
Lost your e-mail can you resend.
kim56
I know the feeling about having this condition. I am 56 and I am having a lot of issues with ulcers on the area by my toes it happens about two to three weeks after Gettysburg one healed up. The pain is unbearable at times. My friends hall me a lot when this happens. But I have not told all of my friends about my condition, but ones I have are very supportive.
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