Klippel-Trenaunay-Weber Syndrome , Experiences

Skin, nail and hair health
1

I am looking for people who have KTWS. I was diagnosed since my birth. I have never really thought of it as an obstacle but as Im getting older (im 27 right now) I realise that how I do my daily things and how I deal with pain is not "normal". Where i am from there is not much known of this syndrome and I am very curious how other people deal with their KTWS in their daily life?

How do you deal with the pain, with work (or school?) , with relationships and your thoughts about the future and kids?

I have KTWS in my right leg and I have walked most of my life with cruched. It never stopped me from doing what I wanted in life, but slowly I get a little more obstacles.

Would highly appreciate if you would send me a message.

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2

Hello Cindy1

Well this is weird. I've rarely talked about the condition myself if I'm honest.

My name is Daniel, I'm 33. I was diagnosed with KTWS at birth, like yourself.

I have no comparison to judge how severe my condition is as I've never bothered to compare - that's the truth. But one side of my body is bigger than the other. My right side is my largest. I have the birthmarks on my face and chest. And probably the most annoying attribute to this condition is I have leg ulcers on my right ankle.

Apart from the leg ulcers, I can honestly say I feel I've lead a normal life.

I had all the operations when I was younger like laser treatment on my face, which has dulled considerably the port red wine stains. I had my left leg extended - I can't remember by how much now.

I had veins removed from my inside right thigh when i was really young.

The only effects I get today are hollow remarks from certified idiots and a built up shoe to stop me walking with a limp.

I have a partner that I've been with for over 5 years, I work - limited hours - but I work.

Personally I think the future is as scary as you want it to be, or as happy as you want it.

Anyway that's probably enough info from one stranger. I'll check this discussion every couple of weeks or so.

Dan.

3

Hello Dan,

Thank you for the message on this topic! I have send you a message.

4

My name is Maria and I am 41 years of age and like many others, I was born with this syndrome. I joke that I am a walking science project as I have been labeled with many different conditions until the age 13 at which time a doctor in Hawaii told my parents and I that I had KTW.

My whole left side, including my face, and internal abdomen space have swelling. I have a few light port wine stain. I did have a blood blister on my face until I was 16. I went to a laser acupuncture doctor who was able to remove it. The laser didn't hurt nor did it burn. I also had laser acupuncture and that helped my swelling. Although this is not recognized by modern medicine, I truly believe in it and wish I could find the person that helped me when I was younger. I have been very fortunate to not have experienced the pain side of things, although when my swelling is bad I am uncomfortable.

In 2000 I had an angio sarcoma that was removed from my left thigh. I have been told that I was very lucky person to survive that. In 2005 and 2008 I gave birth to little ones and they do not have the syndrome. I have been very blessed.

I just seen a doctor today who informed me that there really isn't any doctor that specializes in this syndrome for adults. Most of the doctors see children. This was discouraging information for me, because I feel that we as patients should have a place to go that can provide us information.

I hope that others will respond as information is valuable.

5

Hi Cindy

Although im 45 years old, only today i have finally been told i have KTWS, i was 7 years old when suddenly overnight i stopped walking, it was mainly my left leg, The Hospitals in Sheffield U.K had never come across anything like it before, but Derby did two operations on me but couldnt remove what i had, over the years i stopped walking and been in a wheelchair alot of years now, 8 years ago i had a below knee amputation on my left leg. I have a 24 year old son who is very well, but i was told today that he should be tested to see if he carries the gene, also my syblings too. until last year i was not in contact with a Neuro Surgeon, maybe due to neglect, but i do lead a very good life and i consider myself very lucky, i feel but better that they are now going to test me every two years to see if i do get worse or my curved spine gets worse.

6

Thanks Maria and Chris for sharing your story on this topic.

If you want to ask anything or talk, feel free to message me smile

7

Hi guys! Wow I am so happy that I have found others with kts. I was diagnosed with a "port wine birthmark" at 3 years old and then was correctly diagnosed with kts at about 14 years old. This affects the whole of my left leg and foot. I am now 21 and I have had sclerotherapy which got rid of some large veins that bothered me. I then had some veins stripped at age 18 and then some large large varicose veins cut out at 19 years old.

Now have trouble walking and I'm working hard to manage my full time job.

Am treated in leeds. Is there anyone else from this area? I love reading everyones stories as its nice to know we are not alone smile

8

Hi my name is Lynne, I'm from Newcastle Upon Tyne and I'm 49 this year but only found out about 5yrs ago what was actually wrong with my leg. I have no port wine stain but did have a large varicose vein which was only removed last year, I had a blood clot removed when I was 5yrs old, but was never really told as to why my left leg was always thinner and weaker, even though I knew that my leg was n't as strong as my other leg, when I was 21 I joined the TA, which surprised me, as I was told that I did the mile run faster than some of those who were fitter than me, I remained in the TA for over 4yrs, but as of late I don't know if its with old age or not, but the pain and swellings are becoming more often, I have had numerous scalotherapies and MRI/CT scans and attend hospital almost three times a year, its weird because even though its suppose to be hereditary I don't know of anyone else in my family who has had this, but it's nice to know that I'm not alone, smile

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Hi Lynne, thank you for sharing! To me its inspiring that you joined the TA for 4 years! :D

10

Hi my name is Shandy. I was born with KTWS but it wasn't until i was 10 when they diagnosed me with it. I am 32 now and for the most part do not have any major problems caused by this syndrome. My entire left leg and foot are covered with port wine stain and i manage the swelling in my leg with a support stocking. If i do not wear my support hose my leg swells twice as large as my "good" leg. I do have some pain in my foot and ankle at times.

When I was younger i would see a vascular specialist at OHSU.

I have one son who is eight and he is perfectly healthy. I did have to take blood thinners by shots during my pregnancy to prevent the possibility of any clotting issues in my leg. I have not seen a Dr in my town that has even heard of this syndrome. Its very nice to read some comments by all of you who have the same sort of issues as i do.

11

Hi, I have 8 yo daughter who has diagnosed ktws since 6 she was 6 months old. Until september this year she didn´t have any real difficulties but now she is in serious pain. How do you cope with pain? It seems, nothing helps and we are desperate. We live in Estonia and we do not have any support groups for this condition. That´s why I came here for advice.

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Dear Cindy and Everyone Else:

I understand your frustration at not finding really anything support or provide help for those with KTWS.  My husband was just last year diagnosed and he is now 53!  He has significant port wine stain on his left side, extending from his foot to torso & covering approx. 60% of his skin in that region.  His entire left side is also larger in diameter, ranging from 3-7" difference. He has had Deep Vein Thrombus diagnosed but left untreated in his left thigh area which causes extreme daily pain.  He also experiences chronic debilitating headaches that can only be comapared to cluster headaches, but so far we have found no one to diagnose what they are, if there is a link between them and KTWS, and have found nothing that helps control them or the pain.  As unfortunately, there is no one in our area of the U.S. that understands or treats this.  a website I have found some answers and guidance on that might be of help to you is:   k-t.org

I pray we will all have the answers someday. God bless!  smile

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Hello Cindy, My name is Melba Hyatt Rennicks and i was born with KTWS. I had multible surgeries as a baby and was in a body cast until I was 5 years old. After that I had a few problems every now and then until I turned 36 years old, I'm 50 years old now. I have it on my left leg and it looks like my whole leg was burned, my left leg is 3x's bigger then my right.. I use to be a Nurse and I used jobst support holes. In 2000 I developed a blood clot in that leg, then in 2002 I developed 4 more and I am in severe pain every day. They want let me work now, but I don't think I could if I wanted to. I see a pain specialist and a Vascular surgeon but they really don't know alot about this. I would love to find a Doctor that know about this. I have alot of back pain due to my left leg KTWS goes up to my back. Great to talk to you and I wil give you my e-mail if you want to let me know if you got my letter and if you know of any Doctors that knows about this.  Thanks Melba Hyatt   _____

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Hi Cindy, I have a 5yr old daughter who was born with KTS. She has the port wine birthmark that runs the full length of her left leg in which she also has hypertrophy. There is also an unknown mass in her abdomen which thankfully is only pushing against her bladder and no vital organs. She is in pain everyday and suffers arterial bleeds from her blips as they call them and uses a wheel chair regularily. I have learnt so much about this condition since her birth and she is under the care of great ormond street hospital who we visit weekly. I am currently taking the DWP to a tribunal for dismissing her condition and saying she needs no more care than any normal child her age. The good news is that I believe there will soon be an oral medicine that will help with this condition although probably a long way off, I was told this at our last hospital visit. I would love to get in touch with fellow sufferers as there seems to be no support groups in the U.K. There are some great groups on Facebook in which you can chat with both sufferers and the parents of sufferers and its full of great advice.

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my name is manuel rivera i was diag from birth with ktw i my right leg yes it is very painfull and can lead to alot of life obstacles ill be 29 next month i build firetruck pumps for a living i work 120 hours bi weekly  i have a son born comepletely healthy and no birth marks i deal with pain and limp everyday   i have found best that heat and hot baths soaking in epsom salt helps alot  along with the pain management from my doctor when i was little i used hot water on wash clothes    be aware of blood clots i had a blood clot in my right leg in the main artery at the age of 18 i be normal if it kills me ad everyone with ktw or kts needs to think the same way   we are normal we can do it the way they do it   and when we accomplish it  its a better achievement for us!!!!!   take care of your daughter and believe szhe is in pain when she says she is get her pain treatment asap  heating pads and a jobst stocking compression stocking prescription  it helps the compression of her veins and helps he breath

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I'm so glad I found this discussion,  I also have KTWS, which was only diagnosed when I was pregnant at 19yo. I have port wine stain all over my back which since being pregnant has spread round over onto my stomach too, also down my right leg slightly too. My right side is bigger than the left and where my port wine stain is - past couple of years has gone like cellulite and lumpy- which isn't very nice at all. My daughter is now 7 and perfectly healthy,  although my pregnancy was very painful (I would never put myself through pregnancy again!) Feel free to message me smile 

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Thanks everyone for still posting your experiences with KTWS in this topic! Its really comforting to read your stories. I am going to see a new doctor somewhere in october who has read my file and is interested to try to see what he can do for me now for my future. I am slowly noticing some small relapse so im curious to see if that can be fixed. I hope you are all still living a healthy and positive life. Will keep you posted.

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Hello Cindy, and hello to all of you that has responded on this topic.

Im a 26 year old woman diagnosed with KTWS, i got that diagnose when i was 8-10 years old, i actually dont remember. No one had ever heard of it before and didnt understand what kind of syndrome this really was. In my teenage years i wasnt that affected by it. I have it on my right side, my arm, shoulder, chest and upper back, i also experince trouble and pain at lower back and right knee. It started about 3-4 years ago, it got terribly worse over night. Now i have all kinds of pain happening. Im swelling badly in my arm and hand, im developing more and more of these blisters, and my red wine stains are mainly located in the middle of my chest, but also have it on my right shoulder and upper back. Till this day i still have not met a doctor that fully understands this and what it does to me. Right now i cant even sleep cause of the pain, these blisters burn and hurt so much, and more of them keep coming.

This is the first time i've ever had anyone that understands this condition to talk to about it. Im so sick and tired of meeting doctors that does not know a thing and cant help me, i guess im a little depressed these days. The past 6 months ive been in daily pain and they cant do anything about it. My doctor is understanding and tries to support me in any way he can. I notice that it keeps getting worse the older i get, it has never been as bad as the last years. I miss my job, i miss my hobbies, very often even as simple things as lifting a grocerybag is impossible to me.. Im sorry for my grammer and spelling mistakes, english isnt my native language.

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Hi my name is Sandy Montgomery and I am 28yrs old. I have KT weber disease, port wine stain, Steiger weber syndrome, congenital glaucoma, have seizures, I've been hit by a car, I'm a recovering drug addict and I have had several doctors tell me that I would not live past a certain age. I'm hanging in there I don't know how I'm reaching out to get to know people like me and information about it. I Have it from head to toe and I am struggling.

thanks for letting me share

sandy

20

Hello all,

             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.