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Klippel-Trenaunay-Weber Syndrome , Experiences

Posted , 32 users are following.

cindy1
cindy1

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.

Emis moderator comment: I have removed the email address as we do not publish these. Please use the Private messaging service.

2 likes, 54 replies

54 Replies

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  • melba31366
    melba31366 cindy1

    Posted

    Hello Cindy, My name is Melba Hyatt Rennicks and i was born with KTWS. I had multible surgeries as a baby and was in a body cast until I was 5 years old. After that I had a few problems every now and then until I turned 36 years old, I'm 50 years old now. I have it on my left leg and it looks like my whole leg was burned, my left leg is 3x's bigger then my right.. I use to be a Nurse and I used jobst support holes. In 2000 I developed a blood clot in that leg, then in 2002 I developed 4 more and I am in severe pain every day. They want let me work now, but I don't think I could if I wanted to. I see a pain specialist and a Vascular surgeon but they really don't know alot about this. I would love to find a Doctor that know about this. I have alot of back pain due to my left leg KTWS goes up to my back. Great to talk to you and I wil give you my e-mail if you want to let me know if you got my letter and if you know of any Doctors that knows about this.  Thanks Melba Hyatt   _____

    Patient Moderator Note: I have removed an e-mail address from this reply as it is the policy of patient.info to not publish these within the forums. If anyone is interested in this removed information then please contact the author via the Private Messaging system requesting such. Thank you for your cooperation.

     

    • cindy1
      cindy1 melba31366

      Posted

      Hi Melba, thanks a lot for your message! Its incredible that you have been in a cast for over 5 years! I am also still searching for a doctor who actually tried maybe different things, but its difficult. I wont give up though! wink
    • terri22
      terri22 melba31366

      Posted

      Hi Melba! I am 36 and have ktws. When I read your comment and seen that you suffer from back pain I just had to ask you a few questions...I hope you don't mind!😊 In the last 6 years I have had 5 back surgeries and as of today I'm still miserable. The doctors that I see have no idea what ktws is and when I mention that I am concerned that the ktws may be the reason that what works for normal people isn't working for me they just think I'm crazy. My right side is affected and most of the problems I have with my back is on the right side. I can't find anyone who can tell me whether or not my nerves, bones, muscles and ect can be affected by the ktws. Do you happen to have any information on any of that? If you don't mind me asking, where are you from? I'm in Alabama. Thanks in advance for any information you can offer me!

    • Olm
      Olm terri22

      Posted

      Hello terri22,

      My name is Daniel, I wrote on this message board about four years ago. I'm 37 and I was diagnosed at birth with KTWS. I also suffered from back and hip pains. For me, it was because my right leg was bigger than the other. I was unable to stand straight meaning my back was out of line and causing me pain. When I was young, I had my left leg extended by a certain amount I still don't remember by how much, and I now wear a built up specially made shoe to make up the 3.5(ish)cm difference. I don't know if this helps. If you've been having operations on your back then there must be other complications that I am not aware of. But I wanted to write to you anyway.

      I agree with you that it's quite frustrating that doctors seem to have a relatively small amount of knowledge on this. I'm not blaming them for there lack of knowledge. For me, I get the impression here in England that they're willing to learn more. Every hospital stay I've had in my adulthood has had visits to my ward with dozens and dozens of junior doctors with thier extra cold stethoscopes. Thirty I counted in my last visit which was many years ago. Quite intimidating.

      But like I said, I don't know if my experiences help yours. But at least I can contribute to this forum and maybe/hopefully you guys feel like you're not alone with this syndrome's weird symptoms.

      All the best, terri22. All of it.

      D

    • terri22
      terri22 Olm

      Posted

      Hi Daniel! Thanks you so much for responding with your story! In my case my right leg is much bigger than my left. It's also 3/4 of an inch shorter. I've had lifts and shoes built to straighten me up but that was done within the last two years and when I wear the shoes I am in more pain than when I just walk the way I've walked for the last 36 years. I feel like because my body has adjusted to the difference in length that when I straighten myself up it is putting my back in a bind. I also think that walking the way I have my whole life has caused my back to wear out prematurely. As a child every doctor who seen me wanted to show me to everyone that they knew! I can remember droves of doctors and students coming through and looking at me and the doctor saying "look at this good because you'll probably never see another patient like this"! My parents have just always told me I was special! Lol! I really appreciate your feedback! I'm hoping someone on here can direct me to a great doctor! Have a great day Daniel!

  • samantha36188
    samantha36188 cindy1

    Posted

    Hi Cindy, I have a 5yr old daughter who was born with KTS. She has the port wine birthmark that runs the full length of her left leg in which she also has hypertrophy. There is also an unknown mass in her abdomen which thankfully is only pushing against her bladder and no vital organs. She is in pain everyday and suffers arterial bleeds from her blips as they call them and uses a wheel chair regularily. I have learnt so much about this condition since her birth and she is under the care of great ormond street hospital who we visit weekly. I am currently taking the DWP to a tribunal for dismissing her condition and saying she needs no more care than any normal child her age. The good news is that I believe there will soon be an oral medicine that will help with this condition although probably a long way off, I was told this at our last hospital visit. I would love to get in touch with fellow sufferers as there seems to be no support groups in the U.K. There are some great groups on Facebook in which you can chat with both sufferers and the parents of sufferers and its full of great advice.
    • cindy1
      cindy1 samantha36188

      Posted

      Hi Samantha36188, thank you for the message and the information! I would love to talk to you if possible!
    • yvonne71374
      yvonne71374 samantha36188

      Posted

      hi i am 50 and have KTS.which has caused a lot of problems i have port wine covering my right side and the right leg is bigger than the left. when i was only 22 i had a hemrage in my leg and nealy bled to death. i have had them striped 2 times and had the phom injecksions 4 times, they cause me pain. standing in one place is painfull. just had them phom injeksions again, sorry about my spelling. i no how other people feel as it is a rair condision.

       

  • shelley_27
    shelley_27 cindy1

    Posted

    I'm so glad I found this discussion,  I also have KTWS, which was only diagnosed when I was pregnant at 19yo. I have port wine stain all over my back which since being pregnant has spread round over onto my stomach too, also down my right leg slightly too. My right side is bigger than the left and where my port wine stain is - past couple of years has gone like cellulite and lumpy- which isn't very nice at all. My daughter is now 7 and perfectly healthy,  although my pregnancy was very painful (I would never put myself through pregnancy again!) Feel free to message me smile 
    • cindy1
      cindy1 shelley_27

      Posted

      Hi Shelley_27, was the pregnancy more painful because of the KTWS?
  • cindy1
    cindy1

    Posted

    Thanks everyone for still posting your experiences with KTWS in this topic! Its really comforting to read your stories. I am going to see a new doctor somewhere in october who has read my file and is interested to try to see what he can do for me now for my future. I am slowly noticing some small relapse so im curious to see if that can be fixed. I hope you are all still living a healthy and positive life. Will keep you posted.
  • lady36727
    lady36727 cindy1

    Posted

    Hello Cindy, and hello to all of you that has responded on this topic.

    Im a 26 year old woman diagnosed with KTWS, i got that diagnose when i was 8-10 years old, i actually dont remember. No one had ever heard of it before and didnt understand what kind of syndrome this really was. In my teenage years i wasnt that affected by it. I have it on my right side, my arm, shoulder, chest and upper back, i also experince trouble and pain at lower back and right knee. It started about 3-4 years ago, it got terribly worse over night. Now i have all kinds of pain happening. Im swelling badly in my arm and hand, im developing more and more of these blisters, and my red wine stains are mainly located in the middle of my chest, but also have it on my right shoulder and upper back. Till this day i still have not met a doctor that fully understands this and what it does to me. Right now i cant even sleep cause of the pain, these blisters burn and hurt so much, and more of them keep coming.

    This is the first time i've ever had anyone that understands this condition to talk to about it. Im so sick and tired of meeting doctors that does not know a thing and cant help me, i guess im a little depressed these days. The past 6 months ive been in daily pain and they cant do anything about it. My doctor is understanding and tries to support me in any way he can. I notice that it keeps getting worse the older i get, it has never been as bad as the last years. I miss my job, i miss my hobbies, very often even as simple things as lifting a grocerybag is impossible to me.. Im sorry for my grammer and spelling mistakes, english isnt my native language.

    • cindy1
      cindy1 lady36727

      Posted

      Hi Lady36727, thanks for being so open and honest in your message. I would love to talk to you if possible!
  • sandy1986
    sandy1986 cindy1

    Posted

    Hi my name is Sandy Montgomery and I am 28yrs old. I have KT weber disease, port wine stain, Steiger weber syndrome, congenital glaucoma, have seizures, I've been hit by a car, I'm a recovering drug addict and I have had several doctors tell me that I would not live past a certain age. I'm hanging in there I don't know how I'm reaching out to get to know people like me and information about it. I Have it from head to toe and I am struggling.

    thanks for letting me share

    sandy

    • cindy1
      cindy1 sandy1986

      Posted

      Hi sandy1986, I would like to know how you are doing right now? Do you have a support system around you?
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