If you're here it's probably because you, or someone near to you, has been diagnosed with that crazy thing called Klippel-Trenaunay Syndrome. While I come from a medical family, I'm a social scientist by trade and since there are better, stronger and much more fun sites to read (hellooooo Mayo!) what you'll see here is what it's like to live with KT on a daily basis.
Those of us who are caregivers to family with rare diseases have the unique experience of gaining knowledge (sometimes "TMI", as my daughter would say) about a variety of medical conditions we'd never heard of, and probably wished we hadn't, before. Some of us end up as lay experts on the condition; I've lived that personally with KT. As caregivers we deal with most of the outward aspects of it, we know what a beast this thing can be. We're dealing with the medical equivalent of Bigfoot. I can't even say Santa because almost everyone in the west has an idea of what a Santa is. Bigfoot, on the other hand, well, people have claimed to have seen it, and the rare picture exists, but nobody has really ever hung out with Bigfoot, or even walked past him in the mall come That Time of the Year. The greatest role for us then, is advocacy. By yapping to everyone who will listen to us, we can make more people aware about this crazy KT life.
As Klippel-Trenaunay is an amazingly unique condition, no two cases are the same and your mileage may vary. This is what KT looks like through our eyes. Please note that I am not a medical doctor nor am I dispensing advice. Please, please, please, if you have any ideas, questions or concerns about your or your family member's health, go directly to your medical professional for advice and treatment.
Wishing you all the best on this insane journey!
