The International K-T House & Mentor Program

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I have a dream!

I’m calling it the International K-T House & Mentor Program*.

So many parents first learn of Klippel-Trenaunay Syndrome when their child is born with it.  Those moments are often frantic moments, particularly for parents whose children are born looking very different from the picture they had in mind.  Making this experience even more traumatic for K-T parents is the stark reality that so little information is forthcoming from the doctors who guided their baby into the world. 

K-T parents need a regular, straight forward program that gives their child ready access to K-T experienced vascular surgeons, intervention radiologists, and the like.  This kind of program needs several components to be successful.   These are:

  1. A Mentor component which would be a K-T parent and/or K-T adult.  It would be great if these Mentors were to also have first-hand experience with a similar form of K-T as to the child being supported.
  2. A medical community that caters to the Klippel-Trenaunay Syndrome patient community delivering a flat-rate diagnostic regime/program.  This program would at least assure the parents that K-T experienced doctors are able to do initial diagnostics and map out a strategic medical care program for the child, even if this includes partnering with the child’s pediatrician and so on. 
  3. A K-T House component that opens our homes to new parents seeking short-term stays while undergoing scheduled diagnostics at a nearby K-T medical provider.  These folks would likely live near a K-T medical institution.  If opening your home is not feasible, then volunteer in a docent role guiding the K-T families to local accommodations, providing them with maps, and possibly showing them to the medical institution on their first visit including handling introductions to your K-T doctor. 

I’m looking for creative volunteers to brainstorm the components of this program and to begin encouraging the medical community to work on very concrete diagnostic programs that give new K-T parents an attainable diagnostic regime. 

This program is a jump-start on a better life for those kids born with Klippel-Trenaunay Syndrome.  It is a non-profit venture which will be staffed by volunteers from our community.  Those with funding experience may wish to work on a legal trust or foundation and I’m happy to work with you to set this up provided the outcome directs no less than 95% of donations directly to the K-T parents and K-T kids in need.  Existing foundations wishing to partner on this endeavor, please consider this effort a mutual aid program.  This is an international endeavor looking for world-wide and world-class partners.

We need your help, please think seriously about joining this effort.  If we can save just one set of parents from not knowing, or being compelled to deal with a local medical community that just doesn’t know, we will have done great things.

WilliamAntonLee@wordpress.com is the home of my personal journal which is the anchor for humble efforts to educate new K-T Parents and help our young K-T companions.  Please post your ideas and interests here, or if you prefer within the wall posting section of Facebook.  I’m new to Twitter and not quite ready to go public with my address yet. 

Thank you in advance for your help. 

Best Regards, 

William Anton Lee

AKA: Bill Lee

 

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* The International K-T House & Mentor Program ©2011 ®2011

Stasis Ulcer Infection

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… here we go again

Confucius says, “K-T man wearing sandals has no business standing in a tiny bathroom while other man blind-tosses moldy sheetrock”. Yep, here we go again! It’s amazing how quickly we humans forget pain. These stasis ulcers are seriously painful. I’m hoping my body still chooses to fight these miserable things off, but even in the best of cases it’s a 2 – 3 month process. Good news, the DuoDerm bandage went on immediately. I’m a little concerned though; the usual magic is getting a slow start this time. It’s been 72-hours and the pain is still imposing. To my K-T friends this may be my new normal. Last year’s batch of stasis ulcers attracted a nasty strain of Staph bacteria that continued its invasion reaching my lymph system. That was a new experience. Having a lymph node in my groin area “sacrificing itself for the cause” after mushrooming into a small baseball was a small consolation to Mother Nature’s best efforts to keep me alive. We’re definitely looking to avoid a repeat performance. Oh well, at least the nightly burning leg symptoms won’t be as noticeable while these ulcers have their way with me. Tomorrow morning we’ll be stepping up to my homeopathic treatment, brown sugar under the DuoDerm bandage, along with a call to the doctor.

Thinking about Goodness Today

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There are men in this world who you grow to admire having been raised by them.   There ways are not always obvious, but their hearts clearly point the way.  This week as we work on my Dad’s home to freshen it up a bit for his sister who he asked us boys to care for when he no longer would be here to do so, and as I sleep next to the ashes of my father-in law, Pop, who would have joined me in this endeavor were he alive today, I’m overwhelmed with the memory of their kindness, their goodness.  Both men, William Harold Lee and Robert E. Wood, often did things for folks in lieu of their own pleasure or convenience, and never asked others to do what they wouldn’t do themselves.  Where there was no time, they found it anyway.  I strive in the hopes my soul will be worthy of sitting with them again some day.  I love these men.  They taught me humanity.  They taught me quiet love.

by William Anton Lee
2011 November 27
Thinking about Goodness Today

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

When is Sweet Not Sugar

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Ok, we’ve pretty much accepted that sugar is not so good in our diet.  Try avoiding it entirely these days as you travel and socialize.  Heck, try shopping it out of your grocery items.  

I found the article referenced below very interesting and educational.  I haven’t chased all of the information presented to ascertain veracity, but if the material presented is to be believed sweet has a panacea of more reasonable options than the processed white sugar we all taught is the king of the kitchen table.

Read on: Healthy Sugar Alternatives (Michael Edwards)

Thesis – Antithesis – Thesis !

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Thesis – Antithesis – Thesis !

Here, here, Brother Edward, your mantra lives.  To all those skeptics who say we are doomed to our prejudices, I say bunk!  To those who insist that heart-felt opinions can’t be changed, I say bunk! 

Click and Read – you’ll better understand Brother Edward: Climate Skeptics Take Another Hit


PS. I’m sorry about  the annoying stuff that the magazine referenced above insists on presenting when you simply want to read an article.  I’ll have to find another source for this work.

by William Anton Lee
2011 November 23
Thesis – Antithesis – Thesis !

Vascular Malformations

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More Research *

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

K-T Definitions & Explanations

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More Research*

Klippel-Trenaunay Syndrome, as defined by:

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