
Klippel-Trenaunay-Weber Syndrome Support Group
Klippel Trenaunay Weber syndrome (KTWS) is a medical condition in which blood vessels fail to form properly. Although the cause and processes surrounding KTWS are poorly understood, the disease is diagnosed by the presence of at least two of the symptoms on a single extremity: A distinctive port-wine stain with sharp borders, Varicose veins, Hypertrophy of bony and soft...

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Is there anyone out there that can tell me what I can expect of my 16-month-old daughter with this KT-syndrome disease? She doesn't seem to have the large leg like so many others I've seen. Her affected leg is actually smaller. She doesn't have a problem with it much. In fact, she started walking earlier than normal because it was painful for her to crawl on her knee. The knee is what has been the worst for her through her short little life. Do we do laser surgery to attempt to remove the varicose veins and/or darkened skin? I just wish there was a doctor around here that could help me with this. If anyone has any stories it would greatly help.
Thank you!
Thank you!
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Hope this helps!
I also have port wine skin from birth.. I have just this port wine skin without any other deformation of my body. Did you find any doctor or possibility to take off this skin with laser procedures?
I hope that with your daughter everithing is ok.
Good Luck and God bless
Go to this web site b/c thier are team of doctors that can help you with these inportant question and every kt to ktws patients are diffrent so its hard for me to tell you what to do but look up the web site and thier is a team thier that knows about klippel trenaunay webber sydrome. If you have any more qusetion just ask.Hope all is we'll. Happy holidays,
from ,
Nikki
I am 36. I had never even heard of KTS until I started doing online research on large birthmarks and leg pain.
Personally for me my main problems did not start until I was around 12. I guess when I hit puberty.
My right leg is bigger than my left. I would say probably around 75% of my right leg is port wine stain. It also appears on my right buttock and up about 1/2 way on the right side of my back.
Swelling below the knee has always been an issue for me. After I have been walking for awhile my right leg swells and is twice the size of my left.
I was tormented growing up in school because of my leg. I would wear pants in 100 degree heat to keep from hearing the standard question of....... "Were you burned in a fire?"
I like Leah here was told that I had scoliosis too. I went to see some specialist in Atlanta about it. Funny thing is even the specialists never mentioned my leg or that it was any sort of an issue. I luckily didn't have to wear a back brace, because I could imagine the kids at school then.
I know of just one picture of me where you can see my legs. I rarely wear shorts. I think I was around 12 in the picture, and it is with my late Grandmother. My Mom has it boxed up somewhere. Maybe one day I can find it and scan it onto my computer. I did find a few pictures online of what my leg looks like.
I almost died after giving birth to my oldest. I almost bled to death. I was given 6 transfusions after receiving a D&C.Now after doing research on KTS I wonder if that is what caused it? Had I of known yr's ago I could have taken precautions. I also took birth control pills for many yr's prior to having a tubal ligation.
I've also had problems since childhood with my bladder. Numerous infections and blood in my urine. Finally in 2000 I had a urologist do a cystoscopy and he scraped the lining of my bladder and did 24 hrs. of silver nitrate treatments. It helped for about 2 yrs. and that was it.
My biggest worry is not having the money to see a specialist to confirm KTS is what I do indeed have(I am almost positive that it is). Where can I go, and where can I turn? I also see that KTS is defined as a disability. I can tell you it is hard for me to walk long distances, and it is getting worse with age.
Family members have always told me I am just lazy and just trying to find an excuse not to work. I think anyone who suffers from this can completely understand where I am coming from. I would stand in one spot running a cash register at wal mart for 8 hrs. My leg would hurt so bad at the end of the day that I would cry. I couldn't go to sleep at night, because it hurt so bad. It would swell so much and feel so tight. My right leg also goes to sleep a lot and tingles. I was diagnosed as having orthostatic back in 1999. I now wonder if KTS is the cause of that too?
Well I have rattled on enough here. I guess I just need to vent with those who have had to live with this too. It is SO NICE being able to find those who can relate to me FINALLY!!
Hope to hear from someone soon
thankyou for the time to read this letter to u.
From someone born and still dealing with kt,
Nikki