Posted , 32 users are following.
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 likes, 54 replies
Olm
Posted
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.
cindy1
Posted
Thank you for the message on this topic! I have send you a message.
Maria_in_WA
Posted
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.
chris1968
Posted
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.
cindy1
Posted
If you want to ask anything or talk, feel free to message me
lucyjayne
Posted
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
lynne83838
Posted
cindy1
Posted
shandy3876
Posted
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.
cindy1 shandy3876
Posted
veidi1
Posted
manuel04685 veidi1
Posted
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
cindy1 veidi1
Posted
Could you get any more advice from the doctors?
bluebug cindy1
Posted
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!
cindy1 bluebug
Posted
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