Hi – my name is Noreen. I’m a 55 year old woman with KTS. I’m happy to answer any questions you have.
There is very little information about KTS – especially from a patient’s perspective. Imagine how much less information was available 55 years ago!
My right leg is affected, from toes to mid-thigh. Like Patty, I was told I had “a birthmark”, “extra veins”, “bad veins” a “hemangioma”, etc. Finally, in adulthood, I read an article about KTS, and asked my doctor “is this what I have?” (the answer was “yes” ).
I had numerous port wine stains on my leg at birth. Many disappeared with time, but I still have some large ones near my knee & ankle. I started walking a little later than usual (13 months), and in hindsight I wonder whether that was due to the discomfort associated with my leg. For the first couple years, I didn’t wear any compression on my leg. At about 3 years of age, I started wearing a compression bandage, and continued until my mid-teens. In my mid teens, I was measured for a compression stocking, and have used them ever since.
My leg always tired easily, and was very sensitive to touch. However, I could rest with my legs elevated & return to some level of comfort.
At about age 30, I had the short & long saphenous veins removed, mostly because of the risk they presented. They were many times larger than normal, with no valves – so the risk of uncontrolled bleeding was significant. I didn’t know then that surgery (and the scar tissue that develops afterwards) can impede lymphatic drainage. I no longer could get immediate relief by elevating my legs - and the swelling in my leg gradually increased. The really unfortunate part is that I could have taken action to prevent the complications – but I didn’t know, and my doctors didn’t inform me.
For several years after surgery the swelling & pain in my leg increased. Then I found a lymphodema support group, where I learned many of the techniques that have helped me. I’ve improved a lot, but I’m not back to where I was pre-surgery, and never will be. I am, needless to say, a big advocate for prevention!
If I can help you and your daughter avoid or delay any future problems, I’m happy to share any knowledge I have. If you’d ideas about caring for a child with KTS –you can email me @ email@example.com. Or, if you’d prefer to talk – just email me & I will send you my phone #.
All the best!