Lived with Klippel-Trenaunay-Weber Syndrome for the past 35yrs

Posted , 4 users are following.

This discussion has been locked due to a period of inactivity. Start a new discussion

For the last 10yrs my condition has became worse. I started developing ulcers in my lower legs. I had the portwine stain since birth but until recently no one had told me about Klippel-Trenauney-Weber Syndrome. It was nice to finally know what was going on with my body. I am still trying to learn about it and trying to figure out this syndrome.

0 likes, 4 replies

Report

4 Replies

  • Posted

    I have also just been diagnosed with ktws. i find it amazing how little is known about this condition.I have been troubled with lower leg ulcers for the past ten years and have learned to live with them. recently I have been unable to walk after having a ulcer around my ankle. it is extremely painful and i am unable to bear any wieght on my foot. i use crutches and find these awkward, simple things are impossible.

    I have had a mutiltude of tests and still i am in the dark of why this has affected my mobility. I have been off work for the past five months and this hasnt helped as i really enjoy my job. I am facing more tests again next week to see if an operation may help. but honestly i find the most frustrating thing is that i seem toknow more than my doctors after reading the various web sites. my own gp has never heard of this condition.

    still there are a number of sites that have been really helpful and filled in a lot of the gaps.

    i am no longer afraid to ask questions when i visit the consultant, and have been told the future is bleak, but i will hopefully with some help get rid of the crutches and return to work.

    hope your well

    Report
  • Posted

    Hi there I am 31 and have got KTWS It was first diagnosed when I was 6 months old, all my limbs and torso are affected my right side mainly I have blisters on my right ankle and get celliltis on a monthly basis ( period related I do not know but too much of a coincidence for it not to be) . I am currently suffering from blocked veins and I am about to start scleotherapy in the next week or two around my rib cage, Im sure wearing a bra puts pressure on the veins so I have asked for a full mastectomy to be done as I have had several lumps removed from under the arm area and they keep coming back and they are very painful. There are not many forums about this condition so if there is some out there who has this condition I would love to hear from you as I have yet to meet another soul with it or even if any1 has had scelotherapy treatment to help with a similar problem I'd most welcome the chance to talk to you , Many thanks for taking the time to read this x

    Report
  • Posted

    Hi I am 24 years old and had many test and operations to try and help with ktw I have it on my left leg. The last year I have been in terrible pain and like many other people can't seem to find a specialist to help me. I to think I get incased pain when I'm due on my period I am getting to the point where I might have to give up work.i can't go on my longer being in this much pain I have tried everything
    Report
  • Posted

    Hi All

    Most doctors have described my condition as a cavernous haemangioma. I went to an interventional radiologist based at Hammersmith Hospital, he diagnosed it as a low-flow vascular malformation. I looked this up online and found KTWS. When I saw the description and images I became pretty sure that KTWS is what I have. The Dr told me he couldn't do anything for me. I wasn't really that bothered, I've lived with it all my life (31 now), I can safely say I've accepted it, although for many years it made me frustrated and depressed. I don't know anyone with KWTS so it would be nice to get to know you guys if you're willing; just private message me.

    Report

Join this discussion or start a new one?

New discussion

Report as inappropriate

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up