Undiagnosed and rare conditions
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Klippel Trenaunay Weber Syndrome

weeyinweeyin Member Posts: 11 Connected
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 Community champion Posts: 6,711 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?
    Community Champion
    Disability Gamechanger - 2019
  • Antonia_ScopeAntonia_Scope Member Posts: 1,783 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 Navigate Posts: 84 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
    Beverley Davies
    Parent Advisor
    Navigate
  • LivcLivc Member Posts: 1 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 Member Posts: 4 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 Administrator Posts: 9,568 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 :)
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  • gem_mumOF2gem_mumOF2 Member Posts: 7 Listener
    Hi @weeyin I also suffer with the same condition. I have the same effects as you from it but mine affects my left leg from the top of my buttock to my toes. Do you suffer with a lot of pain? If so how do you manage it? 
  • gem_mumOF2gem_mumOF2 Member Posts: 7 Listener
    Hi @Swav63 I also applied for pip but got turned down. I am interested to know how the appeal went for you?
  • weeyinweeyin Member Posts: 11 Connected
    Hi Sorry I haven’t been on the site for a while. I have daily Epsom baths for pain. I take pain killers and amitriptyline at night. I keep my weight down with swimming as the more weight I carry the more pain I’m in. I would be interested in chatting more to you gem. It is not often that I get the chance to chat with someone that has Klippel Trenaunay so similar to what I have 😊
  • gem_mumOF2gem_mumOF2 Member Posts: 7 Listener
    Hi @weeyin so happy to read your response. I’ve joined a forum before and never had a reply and I am similar to you that I have never met nor spoken to anyone that suffers with the same condition that affects them the same way as me. I would definitely like to chat to you more too 😊 are you similar to me that the doctors can’t offer any long term solutions? I tried scelorotherapy which was great at the start but soon it didn’t have the same effect and I didn’t see much point in carrying on. I’ve been referred to London so will see what they say.....we can always stay hopeful can’t we x
  • atlas46atlas46 Community champion Posts: 827 Pioneering
    Hi @weeyin

    A very warm welcome.

    There is a KTWS support group on Facebook, might be worth a look.

    Let us know what you think.

    Best wishes
  • Chloe_ScopeChloe_Scope Administrator Posts: 9,568 Scope community team
    edited August 2019
    Hi @weeyin, that's okay! I'm glad you have found some things that help :) 

    Also hello to @gem_mumOF2, great to have you here.

    If there is anything the community can do to help the please do let us know!
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  • weeyinweeyin Member Posts: 11 Connected
    Hi

    i was on the KTW Support group on Facebook.  I definitely would recommend this to you Gem.  I came of Facebook in January as I can struggle with my mental health and I was spending to much time on Facebook.  I don’t want to go back on anytime soon as I haven’t missed it.  The support group was a positive part of Facebook though.  Feel free to ask me anything.  Unsure if you can privately message on this or I have no problems giving my number.

    Sorry I’m not clued up on the forum I haven’t been a regular user.  Linsey x
  • weeyinweeyin Member Posts: 11 Connected
    Gem I also had scereotherapy on my private area and foot.  This helped a lot.  I wouldn’t have it on my leg though as the vascular issue is vast and I don’t want to put myself through anymore.  Trying to learn how to accept it as it is.  I had my right hip and knee replaced as the vascular condition affected my bones.  I have walked with a limp for 25 years so I have pain in my left hip and knee due to overcompensating.
    I would be interested to know how you deal with pain?
    I actually met a lovely girl through the Facebook support group.  She had 3 kids.  Having children was never an option for me as I was told it affected me internally and that it would potentially put me in a wheelchair.


  • atlas46atlas46 Community champion Posts: 827 Pioneering
    Hi @Swav63

    What a great result and not having to go through the Tribunal process.

    It is great that this community hears of positive outcomes.

    Enjoy your summer.

    Enjoy your back payments.
  • Adrian_ScopeAdrian_Scope Administrator Posts: 7,409 Scope community team
    Brilliant news @Swav63. Really glad to hear a positive result. :smile:
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  • Chloe_ScopeChloe_Scope Administrator Posts: 9,568 Scope community team
    That's great news @Swav63, thank you for letting us know! :)
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  • gem_mumOF2gem_mumOF2 Member Posts: 7 Listener
    Hi @weeyin thank you for letting me know about the Facebook support group but I too deleted my account and don’t have any plans to reactivate it after 6 years of being Facebook free hehe. I am not sure about being able to private message on here as I only joined the day I messaged you. Ive tried looking to see if I can but can’t find how too but it would be great if we could.
  • gem_mumOF2gem_mumOF2 Member Posts: 7 Listener
    @weeyin I find the older I get the worse the pain seems to be becoming, do you find the same? To try and manage the pain I take painkillers, have a hot bath, use a hot water bottle or simply try and rest with my leg raised on a pillow. I am very lucky that I am blessed with 2 boys, I was fortunate not too be advised against pregnancy but I had regular check ups when pregnant with both of them which was very reassuring 😊
  • gem_mumOF2gem_mumOF2 Member Posts: 7 Listener
    Hi @Swav63 what a fantastic result, it’s such a shame that kts and the daily effects it causes on someone’s life isn’t recognised in the first stage but great that they cancelled the appeal and you got a positive and well deserved outcome. 
  • Jim2020Jim2020 Member Posts: 3 Listener
    Morning all, I also was diagnosed with KTWS from birth, it affects my left leg, as I have got older (still sub 40) the pain is most certainly increasing. Although I was also diagnosed last year with blood clots on the lungs and therefore put onto blood thinners to stop further clots, which seems to have increased the pain I am going through. My question is, are there any other KT sufferers on here/out there that are on blood thinning medication and how do you manage the pain?
  • Swav63Swav63 Member Posts: 4 Listener
    I have been on blood thinners for 2yrs now, and take slow release morphine tablets twice a day also top up with oramorph as and when needed along with gabapentin, did start on sirolimus for 6 months but came off it as it increased pain and infection but did reduce swelling considerably, am now waiting for a neurologist appointment to see if they can maybe stop the pain signals and then look at starting me back on sirolimus. 
  • Jim2020Jim2020 Member Posts: 3 Listener
    Thank you for coming back to me Swav63, I also have my first PIP meeting on Monday morning (Via phone) so hopefully that will go well. Good luck with your neurologist appointment, Ive tried all sorts but nothing seems to help with the pain long term especially now I am on blood thinners its just seems to make it worse!
  • Swav63Swav63 Member Posts: 4 Listener
    Remember on your pip call answer all questions as if it is your worse day of pain and discomfort, and write down roughly what your answers are to each question they ask you as they do tend to try and trip you up, hope all goes well for you 
  • Jim2020Jim2020 Member Posts: 3 Listener
    Thank you again Swav. Not looking forward to the call to be honest.
  • Adrian_ScopeAdrian_Scope Administrator Posts: 7,409 Scope community team
    Good luck with the call @Jim2020 and please let us know how you get on. Whatever the outcome we'll do our best to support you. :smile:

    In regards to how you answer questions on your PIP assessment: it's no longer advised to respond as if it's your worst day. It's important to balance it, to inform them about your good days, your average days and your bad days, rather than only focusing on your worst.
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    Scope

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