RLafary,

I'm 21 years old and was diagnosed with KTS at birth. When I was 18 I searched for doctors in Florida, where I was living at the time, and then I realized that I wasn't going to get any help if I didn't go to any clinics that specialize in vascular anomalies. Over the past 3 years I've had two successful surgeries at Boston's Children Hospital. I also started using compression garments which severely helped with my pain. Although I'm very lucky that my KTS is on the mild side (only affecting my lower left leg) I still experience pain and I do know how troubling it can be. I sincerely suggest you make an appointment at Boston Children's Hospital or Mayo Clinic. They see all ranges of patients and people come from all over the world for appointments.

My 23 year old daughter has KTWS in her right leg. She is currently collecting social security, she was finally approved in March of this year. She is currently going through mulitiple surgeries to help her with pain and discomfort. She has completed her first 3 surgeries which consisted of laser vien coagulation and vien stripping. Her next surgery will be lypo suction to reduce the size. She is receiving treatment at Cleveland Clinic.

My daughter is 22 years old and was diagnosed at birth with KTW. Doctors told us to wait and see want happens,she had port wine stains over half of her trunk and hydrophy on her left side from her toes to her head. I didn't want to do that so I approached the treatment aggressively. I finally found doctors in numerous hospitals that would treat her. since then she has had over 60 procedures from lazer treatments, growth plates taken out of her knee, toes and fingers on her bad side, this worked her legs are now even.Liposuction on most of her body . these sugeries have been twice a year for 18 years sometimes 4 times a year.Her left arm and hand is still bigger but we stopped it from getting bigger and avoid amputation. She had her left buttock reduced as it was a lot bigger and was causing scoliosis of her spine as she could not sit straight. We are waiting to get a buttock implant to make it look normal she already had on but got a staff infection and had to have it removed. If you saw her she looks normal and has a great attitude with the surgeries. I would highly recommend to treat KTW aggresively it worked on my daughter who is now married and pregnant

I got on disability back in 2000 and am 39 years old. Tell him to fight for it. He deserves it. And they can't mesure pain. Plus, if you have to get a lawyer, it's worth it.

hey guys! i hope you don't mind me posting here but i thought I'd like to finally share some of my experiences suffering with KTS. I am 23 and i'm from the UK. I was diagnosed with KTS at about age 5 as before then the doctors didn't really know what to do with me! my left leg is the area effected and i have been managing it with pressure garments and regular antibiotics. i still often suffer with cellulites infections as my leg regularly leaks lymphatic fluid so that kinda provides an entry point for infection. i have been through many surgeries most of them minor because doctors have often warned me that big surgical procedures could result in me not being able to use the limb at all so i decided this was not the option for me. i had a lot of laser treatment as a child, mainly in an attempt to try and remove the port wine stain. this didn't really work and i decided it was too painful to continue with that treatment just to get rid of something i can hide with some snazzy pants! I refuse to accept being told I'll never be able to work, i graduated from university last year with a great degree! but the problem i find is employers would simply rather employ a person who is "able bodied". despite that i have never really let my condition get me down at all, i have never seen myself as 'different' to any of my friends and still manage to do all the normal things people my age do, i go to music festivals, football games, get totally shit hammered and just generally enjoy my youth! i think its entirely possible to manage this condition and still lead a relatively 'normal' life... at the moment i am channeling my energies into something positive and i am now performing stand up comedy in an attempt to educate people about the condition in a humorous way, it also helps me to see the lighter side of things because there is always comedy in tragedy! some days the pain is awful and i can literally not walk but other days i could walk for hours, its just a matter of thinking "ok maybe i cant do what i planned to do today but maybe i'll be able to do it tomorrow". I have been to some beautiful places in my short life and I've had some amazing experiences, I've even climbed a mountain before today! ... I guess what I'm trying to say is, you only get one go at your life so live it as best and as positively as you can, learn to control your condition and not let your condition control you! most importantly I'd say its best to try and see the lighter side of life, some days it will be difficult but if people see that you exude a positive attitude it really goes a long long way! thanks guys! i hope i kinda helped... kind regards, Mark

Hello I am 56 yrs old and have suffered from birth with this condition on my right side leg and over half my back - a little over 1/4 of my body. I keep getting ulcers not so much in upper part anymore but on the arch of my right foot and on top at the base of my toes. I wear a liner stocking and on top a custom made stocking. I am also allergic to ALL antibiotics. I am glad finally I can get someone to talk to about this condition because I thought honestly I would never find anyone to talk to. I hope everyone is taking care of their conditions as best they can. And helping everyone else with their stories and experiences to help give peace of mind that you are not alone with this condition. Just keep chugging along.
God Bless everyone of you.