Care 4 Rare Outreach

… newsletter|Care4KT (under construction)

On this Site are links to resources that I participate in or have used in my own search for information on, or in support of Congenital Vascular Anomalies of which Klippel-Trenaunay Syndrome (KT) is one of many. It goes with being born rare. Because so much of medicine thru the years has been diagnosis based on symptoms, our common looks and conditions have resulted in shifting diagnosis as we age an experience new challenges. I have had awesome doctors through the years, several none-the-less who supported me as I sought doctors with deeper experience. I learned that Doctor’s best practices don’t give them a magic manual for every deviation that Mother Nature throws at us.

My own journey had me diagnosed at birth with something which was fairly innocuous. By the time I turned 17 my body took a turn and I started having very consequential medical issues that my doctors could not diagnose. We started a medical search for answers that took erratic turns – a diagnosis of inoperable Klippel-Trenaunay Syndrome at just over 40 years old and a revised diagnosis at 63 years old that resulted in an operation that so far has constructively changed my life.

Well educated, medical professionals are a product of education and experience. We laypersons have limited resources and absent doctoring rely on the school of hard knocks, medical journals, medical support conferences, support groups, and a modicum of good fortune. Below are links to resources and people who I have come across while traveling these roads. Hope these are beneficial in your journey. Best in Health and life!

Full Disclosure – I am a 65 year old, KT diagnosed at 42, who has been serving as a volunteer in support of mom’s, dad’s, KT-diagnosed, not yet diagnosed for over 20 years now. My most impactful personal journey began on day one after my diagnosis. A big part of that road traveled included literature searches, medical support conference notes, and such. In time these went from paper-scraps to online media as I learned to program a bit – it is accessible as Seen, Yet Not Heard.

Please excuse the mostly personal nature of my Journal content if you spend time slogging through it. It does have a fair amount of K-T Syndrome content, including a mixture of reflections and references to medical journals and doctor presentations at Conferences. Seen, yet Not Heard is being retired over the next several years. Care4KT (Care for Klippel-Trenaunay) is replacing it, a new web-based resource dedicated to supporting rare syndromes and diseases. A legacy I hope outlives me.

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