Klippel-Trenaunay Syndrome Defined

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More Research *

Here is a link to yet another definition of K-T Syndrome.  It’s presented by the Center for Endovascular Surgery: Klippel-Trenaunay Syndrome.

I keep posting additional definitions of K-T Syndrome as I find them.  One concern I have is that the casual reader may get frustrated with the variability in these definitions.  This feeling is palpable for me.  So much so, I continue my research in this area with the intent of synthesizing it all, including taking issue with some of the weaker, lazy definitions. 

A very good attorney instructed me once, “He who controls the definitions in a case, wins the case.”  We K-T kids need to control our own definitions if we are ever going to get a better understanding for ourselves, the medical community, and our governments.  In the meantime, I hope our work informs our community and reinforces our need to organize.

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* Continuing our work to bring you the world’s most comprehensive array of information on K-T

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11 thoughts on “Klippel-Trenaunay Syndrome Defined”

  1. You should note that some individuals with KT have a smaller limb, rather than larger. Years back, I read that 10% of KT individuals have a smaller limb. Also, there may be more than that if you include those with larger limbs due to swelling but smaller bones. I have heard from some KT people who say their bones are smaller in the KT affected limb but due to swelling, the limb looks larger. 🙂

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    1. you are right suzanne as my leg is 2 and 1/2inch shorter than my good leg and my foot is 2 sizes smaller than my good foot i have been told that it is strange as my leg should be larger but is not x x

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  2. Point well made. The definitions we see throughout the medical literature seem weak to me. They’re not wrong, per se, but take on the view the practioner has seen in a very localized endeavor, instead of a more comprehensive description. We in the K-T support community with the syndrome, or parenting children with the syndrome, are getting a better picture then the doctors becasue we avail ourselves of modern, social network tools. The last 14 years have taught me a lot. I’m working on a more global definition that I hope to present soon here and in our media to see if we can provide a rallying point for clarification and presentation to the medical community at large. I believe we can better explain our common ground while also explaining why so many of us are affected so differently. Thank you for your contribution.

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    1. Thank you Christy. I’ve given it some thought and hope to engage several very good writers in our support groups to do this. If plans work out, the work I’m putting in here will form the basis of a input document of sorts. The medical profession sure could help us though by admitting they see little of the actual population and thus have less a view than might serve as credible foundation for generalizations so often made. Don’t get me wrong I praise the work done, but we need cohesive energy on this horrid syndrome. Sometimes the scientific-medical model as we know it, pushes people into small, somewhat isolated groups which can be frustrating for us common folk.

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    1. Doing a lot of catch up on the blog here. Thank you for taking the time to post your personal experience. I’m amazed at just how different our topologies are within a common syndrome. It does. Me sense though; K-T is a congenital developmental disorder. I will be updating my work here to reflect the entirety of our community. Thank you again.

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  3. I am 31 and i never been to a doctor about my “birthmark” Ill i know is that its a port wine stain. At least thats what my mom told me. But the older i get the more i have been looking into this. My birthmark goes from butt to toes, on my left leg and its about 2-4in bigger round maybe more i never checked, not only is it bigger but its hot to the touch, its so hot that i cant usually stay under the covers. but i cant even sleep on that side because it starts to hurt. when it is cold it turns to a dark purple. Could this be KT or does this sound just like a normal port wine stain. if there is anything anyone can tell me that would be great.
    Thank you

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    1. JM,, I’m a 57 year old lady with your same problem. toes to above knee. My Left leg had always been a little longer about 3/4 to 1 inch since puberty ( I could tell by heming my pants). However at about 50-52 (menopause) I had a little growth (go figure) and my leg got wider, enough to notice the difference) and is now about 1 /12 or 1 3/4 inches longer at age 57 3/4. LG.

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      1. I guess mine is not as big as 2-4 inches just seems that way. Its moe like how you said. and thats how i can tell. My pants are tighter on that side, Capris one on side its tight and on the other leg it is loose. I went to a advanced laser place, and now i am being told that do to my veins in my legs in the reason my leg is hot and in pain at times. I am supposed to get those looked into now. will take about 6 months to see if that healed all the issues i was having. Just trying to see if there is more to this.

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