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Klippel Trenaunay Weber Syndrome

weeyinweeyin Posts: 1Member Listener
I was born with this condition which affects the right leg, foot and private area.  Does anyone else on here have this condition or know any specialists that deal with the condition.  Thanks 

Replies

  • Ami2301Ami2301 Posts: 4,987Community champion Disability Gamechanger
    Hi @weeyin welcome to the community! I have just looked around the forum and it appears that you are the first member to have mentioned this! Would you like to tell us a bit more?
    You're a fighter. Look at everything you've overcome. Don't give up now!
  • Antonia_ScopeAntonia_Scope Posts: 1,783Member Pioneering
    Hi @weeyin welcome to the community. 

    Thank you for sharing this with us, have you been in contact with your GP recently?
  • Beverley_ScopeBeverley_Scope Posts: 73Navigate Pioneering
    Hi @weeyin .

    Not sure if you've tried the following site, but Information and support in the UK for Klippel-Trenaunay syndrome is provided by the Proteus Family Network.  You may find some information there that helps.  They also have a facebook page that you could join. 

    http://proteus-uk.org/

    Hope you find what you are looking for.

    Beverley
  • LivcLivc Posts: 1Member Listener
    Hi @weeyin
    I have this condition too although think mine is Klippel Trenaunay (not Weber, or at least not been mentioned by the docs). Not much specific treatment I'm afraid, in the UK anyway. I saw a lymphodema nurse for a while (as that was the most relevant speciality available when I pushed for treatment, in London). She would measure the limb and give prescriptions for nice black compression stockings which were just like strong tights so I wore them in winter. I've now been referred on to a vein specialist and have had one course of non invasive vein treatment. Let me know if you'd like to know anything else or share your experiences a bit. For me, walking lots helps but standing still (e. G. A day out shopping) is a no no due to the pain
  • Swav63Swav63 Posts: 1Member Listener
    I myself have klippel trenaunay syndrome, it effects my right hand,arm,chest and back, I was only diagnosed about 3yrs ago due to the extra growth that started happening and multitude of clots appearing, I suffer from cramps in my chest area and also due to restrictions in my veins I become very tired very quick and find it hard to walk far, I am now unable to work and applied for pip but turned down so appealed to tribunal and waiting for tribunal date. I think it is crazy that the assessment done for pip is by some one that knows absolutely nothing about kts, I know it’s about what you are able to do and not about what you have, but most people can lift a leg up sat on a couch it does not mean you can walk far, if they had a better understanding of the condition perhaps the report would of been wrote differently.
  • Chloe_ScopeChloe_Scope Posts: 2,607Administrator Scope community team
    Welcome to the community @Livc and @Swav63! Thank you both of you for taking the time to share your experiences with us all. I hope you find the community a supportive place and please do let me know if there is anything else I can do to help :)
    Chloe
    Online Community Officer
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