Klippel-Trenaunay-Weber Syndrome , Experiences

As you get older the pain will get worse make sure your compression stocking is up to date and that you havent wore it out also always check with your doctor to make sure you have no blood clots as you will more than likely get over time as i did and many others also. My son was born healthy with no signs of ktw so its normally not inherited

Does anyone else have the webbed toes that can be part of this syndrome?  My son did, and I was curious if it's a common part of this. His doctor said it was.

Im so glad to see that more people have written in this topic, its a rare condition somi was afraid the thread would die out. Id really love to talk more to you cindy!

I'm in my 20's, I've always known I had something wrong with me but my doctors spent years disagnoising me before realising I've had KTWS. KTWS mainly effects my right legt. Because my doctors didn't really understand what I had my condition hasn't been properly addressed over the years. For a long time ulcers have been a big problem. Just when I thought things had stablised I found out that my deep veins were seriously failing. This condition has affected every ascpect of my life. I wish there was a dedicated forum/community for this sort of condition, at times it seriously affects my mental health but I get through it.

Hi, I'm Jenna from Iowa. Im 29 years old. I was born with KTS. It took the doctors 6 years to finally diagnos me with it. It never really affected me when I was younger. all 3 of my pregnancies were normal. I got a DVT in my left leg when I was 21 and again at 22. All the doctors I've been to have never heard of it before. I have a port wine stain on the back of my right leg and half my body is a completely purplish color. And my left side is completely bigger than my right. it wasn't until recently I started getting pain in the left leg to where it hurts to walk. And its getting worse to even stand on it. I also get tingling sensations in my hands, legs and feet. Thanks for starting this discussion!

I also have KTWS I am nearly 40 now and have been fotunate enough to not have had too many difficulties with it. I had an op when i was younger to reduce the length difference in my right leg and some laser treatment periodically as I got older but that has been about it until now, my right leg has always been larger (tissue bulk) than my other but recently I am experiencing pain and bruising for now reason on the marked areas of the skin it seems to be where there are main veins. I massage it with coconut oil to relieve the pressure and swelling but I am really concerned about blood clots and DVT, as the veins are not that pronounced or that visible the doctor said nothing to be done. Does anyone have any suggestions?

Hi Cindy and everyone else!

I think we are talking about two different conditions:

"Klippel-Trenaunay-Weber is an old term. KT used to be called "KTW Syndrome", but the Weber has been dropped to avoid confusion with the Parkes/Weber Syndrome. Parkes Weber Syndrome is characterized by one or more high-flow arteriovenous malformations leading to extremity overgrowth similar to but usually more severe than with KT. KT does not include AV malformations. An angiogram will be normal in KT and abnormal in Parkes Weber."

[b]http://www.sturge-weber.org/medical-matters/klippel-trenaunay-syndrome[b].html

I've been diagnosed with Klippel-Tranaunay Sindrome when I was about 5 years old. I had some vascular surgery done when I was 12. It was painful and invasive, but probably worked. Today my right leg is only 3,5 cm larger than my left one. I had other surgery l too, but less invasive, mostly to deal with varicose veins.

My parents made me go to modern dance classes (Laban) when I was a child and as a result of that I never developed a limp.

Sometimes I feel lonely because is such a rare condition. And in this times, I fear for my future, because I have some pain in my lower back and left knee.

But since I got older (I'm 33) I realized that everyone ends up having one or other form of health problems. I think the key is to get to know your own body, and act on its best interest. Do some pilates, or yoga, whatever fells right. I've been fighting Kung Fu for almost 4 years now. I'm not very good at it, but it keeps me strong and sane.

And in spite of a huge scar on my leg, and all the wine port birthmarks, I've never had any trouble finding a boyfriend. Confidence is key, if you can find yourself beautiful, someone else will too. And beauty is more than good looks, people are beautiful when they make you smile, when they genuinely care for you.

Sorry about the huge letter, I've never talked about this to anyone with the same condition. Hope it's helpful.

Love, Lara

Hello I was also born with KLIPPEL TRENAUNEY WEBER syndrome ...I am 49 years old now and 5 years ago I had blood clots in my left leg the one that KTWS affects me and I have found that my mobility about getting around to shops to do my shopping because I have to walk to the shops I don't have a car although I can drive is becoming a BIGGER ISSUE than 10 years ago 😞 I have kept applying for disability living allowance which is now called personal independent payment and I am denied it EVERY TIME despite my doctor's letters stipulating that this KTWS affects my mobility of being able to get around 😞 My doctor has advised me to NEVER go by aeroplane when I go on holiday as I will be susceptible to MORE blood clots due to the pressure of the plane's take off 😞 Clare Gabriel