Klippel-Trenaunay-Weber Syndrome , Experiences

             I've been suffering this condition for my entire 27 years on this earth and, to be honest, it doesn't get any better. At birth my parents were told i was a blue baby, this was obviously wrong, yet when examined a few days later it became apparent that I had the then relatively unheard of condition KTWS.

             Throughout my childhood I made regular trips to the hospital which were  almost pointless, yet I continued to go. Physiotherapy helped some, at times it also made things worse, but that was cancelled when our car broke down and we couldn't make the appointment. I had regular scans to montior my growth and was given a build-up in my right shoe to counter the difference. Obvious comments ensued from other small minded kids and even some adults, which i admit brought out the worst in me; I thought why should I suffer and not them? It was not the nicest of areas, so a "fat little cripple" was seen as an easy target. People were soon corrected on that in a way I am certainly not proud of. 

                 There is not a single memory I can recall of a moment free of pain, and a life of eternal pain is a punishment I believe none of us deserve.

                 At a young age I fought back, I tried to live a relatively normal life, I tried to join in with my friends and I tired not to scare my parents when my leg would collapse or my back would sieze, or even when I awoke screaming in pain. My skin is much more sensative down my left side so even rough material can cause me to cry out in pain as if someone had scraped off a patch of skin. I had to alternate between a wheelchair, a walking stick and on good days my own legs.

               Since I have became an adult I stupidly believed I had it under control. I was badly mistaken; I worked a decent paying job, had a child on the way and was in the process of buying a house and awoke to find i could not even sit up in my bed. Since then the pain has gotten extensively worse and does not look to get any better; I take almost twenty tablets a day and am waiting for Caudal Epidural injections to try and get my life back an acceptable standard of living.

                 I have three children and a loving wife, A home and agrieving family after the recent loss of my father. The best and only thing I, and all of you, can do is continue to fight this from within; It is the only reason I can stand and walk  everyday, the only reason I can find the strength to lift my kids instead of sitting in my wheelchair, which is only for the days fighting doesnt help, is that I find something to hold on to inside, something worth the pain and misery which for us is an inevitable part of life. I have my wife and kids to hold onto, the best reason in the world to fight back, and sometimes even that is'nt enough, but tomorrow is a new day, a new fight, and a fight I intend to win as much as I can. I hope you can all find the strength to do the same. I suffer from all the problems associated with this disability, so if I can find the strength to fight back from a child and still fight back now, so can you.

                Good luck to all, because this is not an easy thing to deal with, and a lot harder to find support for. You all deserve a round of applause for having the strength to come out and tell your stories, and thank you for including me in your stories. I hope sharing has helped, because nobody I know has ever understood before, at least we do.

Im originally from the sunny island of Curacao but currently live in the Netherlands.

I too was born with KTS (KTWS) and got diagnosed when I was 13...finally...after years of people and schoolmates asking me what was wrong with my left leg.

I have port wine stains on the left side of my left leg and veins popping all over the place but its only predominantly on the left side of my left leg. From the foot to somewhere between my hip and knee. Though no real stains to mention on my upper leg. The stains on my foot are the worst. The popping veins cover every part of my leg that has stains on it.

Throughout my childhood I used to suffer from pain when crawling as theres a vein right on top of my kneecap...so...as i crawled in a playground for instance, it used to swell up and fill up with blood. So much so that I could bend my leg for a day or two...everytime I bump my knee somewhere it used to happen again but strangely havent noticed that much in recent years.

I used to wear the compression garments but it annoyed me so much that I had to was them by hand everyday and yet they still stank of moldy, disgusting clothes after they already take too long to dry. I was annoyed to have to wear them everyday so on 01-2011 I decided to stop wearing them...and to be honest...I dont miss them cause sometimes they used to cut off blood circulation from my leg. Now I still walk as I used to...I even run outside and at the gym...on occasion when I go on one of my citytrips, I walk a LOT. So my leg does end up getting very swollen and feels tight, but if i just lay in bed and keep it elevated, it usually gets sorted by the next day. I only wear garments when I get on a plane....Just in case...though im not sure what that does.

I am scared of blood clots., but aint sure how to prevent them or what to do...my fear is that a clot loosens and travels all the way up to my heart, lungs or brain. Not sure who to ask about this though as my doctor is an idiot and the specialist I used to see only ever tells me (wear ur garment so u r more certain u can walk when u turn 40 ish). Im 29 now and havent seen a doctor about it in well over 5 years. I do however need to get a shoe sole for my right leg so im more balanced as a 4cm difference in length of my left leg is a lot. 

I can say Im fortunate in a way if I read some of the stories here and hope that I dont worsen....to be honest I feel like its better than it used to be as I rly dont pay mind to worry about it anymore...aside from the lumps and blood clot issue. I just made sure I lost 25 kilos of excess weight and try to stay fit so I dont put even more pressur on an already diseased leg. That seems to have helped. The more weight u put on the leg, the more discomfort. At least in my experience.

Im happy to have found this forum posting. and hope that in a way we can all help and support each other through this annoying disease.

Cheers,

Danny

I'm writing since I help my brother who lives with this condition. He's going deaf and never learned to type very well. We live in Indiana, USA.

I've been hunting for people with KTW and looking into help and possible remedies and info to help him. But, he's to the point, he can't work like what he used to (even if it was always against the doctor's orders or my mother and my fears for his health) because of his condition now..

While my parents found out when he was born with portwine birthmarks over half his body, plus purple swelling, he was a rarity when he was born in Heidelberg, Germany in 1960. The doctors thought my father had beat up my mother (who bruised easily with anemia and was also a little bruised on her belly- she was over 9 months pregnant with a 10 lb baby inside her) before he was born. After my mother explained that wasn't the case, the doctor did some research, plus some kind of exam on my brother to find the vein abnormalities in his right leg. While everyone should have major veins for both legs, he was born with one that branches off from the left through the groin with minor veins for all the right leg.

Tests in his teen years really showed the vein abnormality and lack of major vein for his right leg. Doctors only said he shouldn't stand for long periods and shouldn't do contact sports. 

Of course, that never stopped him, even with his diagnosis and doctor's warning. He did swimming, polo and taught swimming to keep fit in his 20s. Then he worked at jobs where he walked a lot but stood too long. The last 12 years, he's done fencing and all terrain combat swordfighting, called heavy fighting, with the SCA, the Society of Creative Anachronisms. He's living down the years of standing now with back pain and leg ulcers. Of course, we couldn't get him to change his ways, until now when he's living with pain. 

Being fit helped him to feel good and deceived him into not worrying about his health.  Until his 50s, he pushed himself to move and lift and work. He worked in retail/shops... which of course was a horrible standing job that he shouldn't have been doing for long periods. Though sitting has recently been making more problems for him.

His right leg has always been a little larger (even more when swollen, with ulcers, or when causing pain from blood clots) but moreso his portwine birthmarks have been more problematic. He has a funny story of Super Brownies. My husband mistakenly made a school formula type box of brownies (I worked for the school system, you need to thin or separate their mixes for several batches when they're meant for an inch tall on a huge pan) which he made in a small pan double thick, about birthday cake height... my brother ate 5 large servings (which were the equivalent of 15-18 average brownies). He thought he was on fire during the night. He told us he felt like he was changing into a Werewolf with how on fire his body felt. He never drinks caffeine or eats chocolate. He had what the average person feels, blood zooming through your veins with the caffeine and a general warmth, but even more, all over his skin. I'm thinking it was more just his birthmarks being flushed with blood high on caffeine. He still never drinks caffeine, it hits him faster and makes him feel too hot.

Sad to say, his health was never a real priority, so we're trying to now deal with his pushing himself in his youth. For a 55 year old, he walks and hunches over like an old man. My father 78 worries he'll outlive him some days. 

Since recovering from leg ulcers, he has repeated issues with blood clots. With rest and putting his leg compression stocking on and putting his feet up in bed they went down naturally. But, his last appointment with a new vein doctor, the doctor said he has a permanent blood clot, with veins below his knee all in a jumble, it won't dislodge and potentially kill him, but won't ever move. He has to live on aspirin forever now... While in the past he was on blood thinners for blood clots and the ulcers, this will be a continual problem and blood thinners indefinitely wouldn't be healthy. Aspirin is milder of a blood thinner and while not wonderful for ulcers in the stomach, supposedly will help his blood clots.

I hope for at least 30 more years enjoying his company, but he's stubborn. We're looking for work he can do that isn't standing anymore, but with him going deaf, he's hardpressed for what he can do now. He's never been more depressed with his health until this last year though, so we are trying many avenues to help him get healthy and financially on his feet again.

I'm very glad to find this discussion! Keep positive and moving! Just as with arthritis, our bodies do better moving and not just lying down and obsessing over the pain. If we do have to lie down, we need to put our feet up and relax completely. I have to remind my brother to do that more. 

I just wanted to let you know Im still glad I started this topic and I love readling your stories. Thank you so much for them.

I am currently giving it one last chance to try and see if a doctor/specialist can tell me more. I don't expect that much, but understanding would mean a lot to me and will help me accept it more.

Even with all the set backs and pains, I see myself as still a positive, vibrant and very driven/ambitious young woman so whatever future holds, I take it as it comes and as allfalowfield42 says, my body works best if I just keep moving, training and excercising.

Again,If anyone feels the need to talk more in detail, let me know!

My boyfriend has KTWS and I see him deal with it day to day, it is not very easy. He is affected in his right leg and has a really short temper from it because of the pain. Unfortunately and surprisingly science still hasn't come up with a solution for this syndrome. He operated twice on his leg in Switzerland and both times failed, actually making his condition worse. The only thing I see him do to makes him feel better is cardio on the bicycle at the gym, this help the blood circulation move upwards. It helps him feel better for the next couple of day.

I also try to give him massages as much as I can, this also relieves the pain. I suggested for him to go do lymphatic massage session regularly, but he isn't very comfortable yet to do it with someone else. Other than that he obviously wears the tight compressor around his leg all the time, if he doesn't have it on it becomes too painful for him to stand and he has to immediately lye down. (His leg elevated by pillow, in fact that is also how he sleeps every night)

As you see I completely understand and sympathize with KTWS, and my main question is when him and I get married do you think there might be a chance for our children to have this syndrome?

Thank you.

I am 43 years old and was born with what I think is KTW. My whole left side is larger than the right. Even my insides gave extreme lemphadema. I always joke that I am a walking science project. I have two beautiful children that do not have symptoms at all, and I truly thank God for that blessing. As you know...kids can be mean when you are different..and I just didn't want them to experience what I did growing up. I have been told by a doctor that this condition only gets worse as we get older. I think I have been very blessed thus far. I am currently looking into median laser acupuncture because this type of treatment did wonders when I was 17. But...haven't had much luck in Washington finding someone. I an going to try to find the therapist that I saw back then. He helped with my port wine stain on my face. Feel free to send me a message if you want to talk more. It is nice that the internet is helping us connect wit one another.