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I was born with Klippel-Trenaunay-Weber Syndrome on one arm, one hand, bot...

Posted , 2 users are following.

Guest
Guest

I was born with this condition on one arm, one hand, both legs and a smattering on my body and face.

After lots of pronoucements from doctors that "I am lucky" I have lived a very full life - just a few medical problems. People accept "deformities" if you look them straight in the face and talk to them with confidence: people forget that you are not the same as they are and accept you as an individual.

To the mother with the young baby: don't worry, allow your daughter to develop as any another other child - don't stop her from swimming, playing tennis, etc because she will have to expose her body, just give her your support.

Remember, the only people in life who are "normal" appear in glossy magazines and the cinema!

[i:1930b96c3e]This message was automatically imported from the original Patient Experience[/i:1930b96c3e]

0 likes, 4 replies

4 Replies

  • Guest
    Guest

    Posted

    A very positive outlook. I have the condition only on one leg and it has embarrassed me all my life. I have just had the veins treated and a total knee replacement on the affected leg (I am 69). How could any doctor say You were Lucky!!

    [i:3b5d115c43]This message was automatically imported from the original Patient Experience[/i:3b5d115c43]

  • Guest
    Guest

    Posted

    i have kts in my left arm and hand. i am 14 and learning how toput up with it now im growing. i cannot find anywhere to treat my condition only in the usa. if you know any where please reply as i am posting this message.

    [i:b2c6015d28]This message was automatically imported from the original Patient Experience[/i:b2c6015d28]

  • Guest
    Guest

    Posted

    i have klippel trenaunay on one leg. my knee cap is smaller than it should be and now i have advanced arthritis in that knee. i'm 31 years old. i'm now forced to use a cane to walk. i need a knee replacement. but the vascular abnormality is on the surface, all around the knee and a good distance above it, into my thigh. how can they go through all that mess to get to replacing my knee? i'm worried and scared that i will lose my leg. any advice?
  • shoaib
    shoaib

    Posted

    My child,Shanzay Shoaib is 3 yrs old and is suffering from KTS from birth. her left hand, left side of chest and back is purplish blue and her hand expands when she cries or sleeps. when injured,there is a lot of blood lost.

    please guide us to the possible treatments.

    thank you and waiting for your reply.

    Shoaib

    Pakistan

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