Klippel-Trenaunay-Weber Syndrome , Experiences

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I am looking for people who have KTWS. I was diagnosed since my birth. I have never really thought of it as an obstacle but as Im getting older (im 27 right now) I realise that how I do my daily things and how I deal with pain is not "normal". Where i am from there is not much known of this syndrome and I am very curious how other people deal with their KTWS in their daily life?

How do you deal with the pain, with work (or school?) , with relationships and your thoughts about the future and kids?

I have KTWS in my right leg and I have walked most of my life with cruched. It never stopped me from doing what I wanted in life, but slowly I get a little more obstacles.

Would highly appreciate if you would send me a message.

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  • Posted

    Hello Cindy1

    Well this is weird. I've rarely talked about the condition myself if I'm honest.

    My name is Daniel, I'm 33. I was diagnosed with KTWS at birth, like yourself.

    I have no comparison to judge how severe my condition is as I've never bothered to compare - that's the truth. But one side of my body is bigger than the other. My right side is my largest. I have the birthmarks on my face and chest. And probably the most annoying attribute to this condition is I have leg ulcers on my right ankle.

    Apart from the leg ulcers, I can honestly say I feel I've lead a normal life.

    I had all the operations when I was younger like laser treatment on my face, which has dulled considerably the port red wine stains. I had my left leg extended - I can't remember by how much now.

    I had veins removed from my inside right thigh when i was really young.

    The only effects I get today are hollow remarks from certified idiots and a built up shoe to stop me walking with a limp.

    I have a partner that I've been with for over 5 years, I work - limited hours - but I work.

    Personally I think the future is as scary as you want it to be, or as happy as you want it.

    Anyway that's probably enough info from one stranger. I'll check this discussion every couple of weeks or so.

    Dan.

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  • Posted

    Hello Dan,

    Thank you for the message on this topic! I have send you a message.

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  • Posted

    My name is Maria and I am 41 years of age and like many others, I was born with this syndrome. I joke that I am a walking science project as I have been labeled with many different conditions until the age 13 at which time a doctor in Hawaii told my parents and I that I had KTW.

    My whole left side, including my face, and internal abdomen space have swelling. I have a few light port wine stain. I did have a blood blister on my face until I was 16. I went to a laser acupuncture doctor who was able to remove it. The laser didn't hurt nor did it burn. I also had laser acupuncture and that helped my swelling. Although this is not recognized by modern medicine, I truly believe in it and wish I could find the person that helped me when I was younger. I have been very fortunate to not have experienced the pain side of things, although when my swelling is bad I am uncomfortable.

    In 2000 I had an angio sarcoma that was removed from my left thigh. I have been told that I was very lucky person to survive that. In 2005 and 2008 I gave birth to little ones and they do not have the syndrome. I have been very blessed.

    I just seen a doctor today who informed me that there really isn't any doctor that specializes in this syndrome for adults. Most of the doctors see children. This was discouraging information for me, because I feel that we as patients should have a place to go that can provide us information.

    I hope that others will respond as information is valuable.

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  • Posted

    Hi Cindy

    Although im 45 years old, only today i have finally been told i have KTWS, i was 7 years old when suddenly overnight i stopped walking, it was mainly my left leg, The Hospitals in Sheffield U.K had never come across anything like it before, but Derby did two operations on me but couldnt remove what i had, over the years i stopped walking and been in a wheelchair alot of years now, 8 years ago i had a below knee amputation on my left leg. I have a 24 year old son who is very well, but i was told today that he should be tested to see if he carries the gene, also my syblings too. until last year i was not in contact with a Neuro Surgeon, maybe due to neglect, but i do lead a very good life and i consider myself very lucky, i feel but better that they are now going to test me every two years to see if i do get worse or my curved spine gets worse.

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  • Posted

    Thanks Maria and Chris for sharing your story on this topic.

    If you want to ask anything or talk, feel free to message me smile

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  • Posted

    Hi guys! Wow I am so happy that I have found others with kts. I was diagnosed with a "port wine birthmark" at 3 years old and then was correctly diagnosed with kts at about 14 years old. This affects the whole of my left leg and foot. I am now 21 and I have had sclerotherapy which got rid of some large veins that bothered me. I then had some veins stripped at age 18 and then some large large varicose veins cut out at 19 years old.

    Now have trouble walking and I'm working hard to manage my full time job.

    Am treated in leeds. Is there anyone else from this area? I love reading everyones stories as its nice to know we are not alone smile

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  • Posted

    Hi my name is Lynne, I'm from Newcastle Upon Tyne and I'm 49 this year but only found out about 5yrs ago what was actually wrong with my leg. I have no port wine stain but did have a large varicose vein which was only removed last year, I had a blood clot removed when I was 5yrs old, but was never really told as to why my left leg was always thinner and weaker, even though I knew that my leg was n't as strong as my other leg, when I was 21 I joined the TA, which surprised me, as I was told that I did the mile run faster than some of those who were fitter than me, I remained in the TA for over 4yrs, but as of late I don't know if its with old age or not, but the pain and swellings are becoming more often, I have had numerous scalotherapies and MRI/CT scans and attend hospital almost three times a year, its weird because even though its suppose to be hereditary I don't know of anyone else in my family who has had this, but it's nice to know that I'm not alone, smile
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  • Posted

    Hi Lynne, thank you for sharing! To me its inspiring that you joined the TA for 4 years! :D
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  • Posted

    Hi my name is Shandy. I was born with KTWS but it wasn't until i was 10 when they diagnosed me with it. I am 32 now and for the most part do not have any major problems caused by this syndrome. My entire left leg and foot are covered with port wine stain and i manage the swelling in my leg with a support stocking. If i do not wear my support hose my leg swells twice as large as my "good" leg. I do have some pain in my foot and ankle at times.

    When I was younger i would see a vascular specialist at OHSU.

    I have one son who is eight and he is perfectly healthy. I did have to take blood thinners by shots during my pregnancy to prevent the possibility of any clotting issues in my leg. I have not seen a Dr in my town that has even heard of this syndrome. Its very nice to read some comments by all of you who have the same sort of issues as i do.

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    • Posted

      Thank you for your story - for me its good to know that the stocking really is needed. I kinda negleted that for a few years (during my puberty), I wish I didn't smile 

       

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  • Posted

    Hi, I have 8 yo daughter who has diagnosed ktws since 6 she was 6 months old. Until september this year she didn´t have any real difficulties but now she is in serious pain. How do you cope with pain? It seems, nothing helps and we are desperate. We live in Estonia and we do not have any support groups for this condition. That´s why I came here for advice.
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    • Posted

      my name is manuel rivera i was diag from birth with ktw i my right leg yes it is very painfull and can lead to alot of life obstacles ill be 29 next month i build firetruck pumps for a living i work 120 hours bi weekly  i have a son born comepletely healthy and no birth marks i deal with pain and limp everyday   i have found best that heat and hot baths soaking in epsom salt helps alot  along with the pain management from my doctor when i was little i used hot water on wash clothes    be aware of blood clots i had a blood clot in my right leg in the main artery at the age of 18 i be normal if it kills me ad everyone with ktw or kts needs to think the same way   we are normal we can do it the way they do it   and when we accomplish it  its a better achievement for us!!!!!   take care of your daughter and believe szhe is in pain when she says she is get her pain treatment asap  heating pads and a jobst stocking compression stocking prescription  it helps the compression of her veins and helps he breath

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    • Posted

      Hi Veidi1, Im curious how things are with your daughter right now?

      Could you get any more advice from the doctors?

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  • Posted

    Dear Cindy and Everyone Else:

    I understand your frustration at not finding really anything support or provide help for those with KTWS.  My husband was just last year diagnosed and he is now 53!  He has significant port wine stain on his left side, extending from his foot to torso & covering approx. 60% of his skin in that region.  His entire left side is also larger in diameter, ranging from 3-7" difference. He has had Deep Vein Thrombus diagnosed but left untreated in his left thigh area which causes extreme daily pain.  He also experiences chronic debilitating headaches that can only be comapared to cluster headaches, but so far we have found no one to diagnose what they are, if there is a link between them and KTWS, and have found nothing that helps control them or the pain.  As unfortunately, there is no one in our area of the U.S. that understands or treats this.  a website I have found some answers and guidance on that might be of help to you is:   k-t.org

    I pray we will all have the answers someday. God bless!  smile

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