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 tissues that may lead to local gigantism.
What to expect
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!
Replies
I'm 47 and have never had corrective surgery for KTW. My biggest challenges as a child were the other kids (mean!) and scoliosis concerns (to no avail). Alas, the port-wine has faded over time, I'm used to having all clothing tailored, and were support on my leg when it bothers me.
Hope this helps!
Make that "wear" support... sorry, can't spell!
Dear Jennmar,
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.
I also am 47....ish and the kids were relentless about the kidding, I think at that time that hurt more than the disease. My right leg was covered by about 75% of the port wine birthmark...They did not have doctors versed in the KTW field. as I understand it now is that the capplarries and other veins "Think they need to feed the red area with more blood, because the birthmark is a living thing as far as the veins are concerned soooo the red mark gets fed and in the mean time the vascular system is being comprimised....As I grew, the birthmark shrank(not by much) but it tipped the scales with the white meat. Then the vascular system thought ooops then tried to "right itself) by then I was 14 wearing a Jobst custom fitted support stockings....very itchy. This worked for 10 years along with being easy on it.....I dont know if the laser sergery would help but I know I would be on the phone finding a doctor that REALY knows about KTW. and not just saying they do! The reason I said that is a doctor stating he knows all about KTW did a vein stripping on me at 26 years old....worse thing I could of ever done....2nd opinions are good too....If your medical insurance is good. I am not trying to scare you ...just dont stop until you get a good answer and a plan.
Good Luck and God bless
I had laser done and the it didn't work http://www.childrenshospital.org/
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 can totally relate to knee pain. My leg and knee will start to hurt so bad when driving or riding for a good distance. I will have to stop so that I can stretch out my leg.
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!!
Hi Jenmar, I hope by the time you receive my comments things will have progressed positively for your daughter. My daughter is 11 and has only just been diagnosed with the condition despite having had the symptoms since she was 3.Obviously as concerned parents we are keen to find out as much as we possibly can, so if anyone out there can signpost us and or provide us with details of succesful treatment options for her leg, that would be really appreciated.
Hope to hear from someone soon
Hi, Dareen, i gave a web site to boston children b/c thats where they dianosed me with ktws and every kt to ktws patent is diffrent but mine is extreamly pain full and i wear a surposrt stocking,like i said i did laser and didn't work but yet again every person is diffrent and if ur affraidof her getting(it help bring mdown the swellingness of the body i think its call the lypfatic fluides and sry i'm not a great speller.) picked n in school a surrport stocking in her skin color is great and i wore it doring school but thier are kids that do nothing but like to pick on ppl but i have high tolerance of rude hurtfuk ppl and thier is great ppl that are cool and ppl just make fun off something they don't understand so maybe printing the heALkth infor on a card and give is good and ppl will always stare(i been dealing with that still now).I feel u should do eather without tLKING TO a dr who knows about klippel trenaunay webber syndrome, I had to drive for to see the dr but it was worh it and doing like a lyphatic massage helps alot and right now thats all i can say now and email me b/c i th9ink i can give u a drs number thats now in texas but when i get back from my trip and i was woundering how is ur daughter doing?You reLLY GOT TO DO THE research b/c one you get the info u can help ur daughter but like i said earlyer every kt to ktws patient is diffrent!I hoepe i help u better.
thankyou for the time to read this letter to u.
From someone born and still dealing with kt,
Nikki