MY KLIPPEL-TRENAUNAY SYNDROME STORY

|about a late-in-life diagnosis with a Rare Congenital Vascular Syndrome

William Anton Lee’s Medical-Scientific-Life Journey
with his wife, family, friends, and fellow companions

 

Aggregating Knowledge on Genetic-Congenital Vascular Anomalies


This is a Discovery and Advocacy Project that started in 2002 with the diagnosis of William with Klippel-Trenaunay Syndrome. This diagnosis preceded the invention of Facebook which meant networking was a bit more difficult. The original blog site included a wide range of subject-matter, including personal reflections on family and life. So much of these were also on William’s research and experiences in coming to grips with what such a diagnosis meant. William found his doctor’s prescription, which was to discontinue working and live in a reclining chair for 20 hours a day, overwhelming.

Sensing his days were a confounding reality of being in and out of energy and lost in the ever shifting clouds of missed opportunity and stunted passions, William began to write articles, poems, prose, and heartfelt reflections. His writings pertaining to Klippel-Trenaunay were meant to help mom’s and dad’s who inevitably might feel as his parent’s did — that they had not done enough to fix him or somehow caused that one very tiny cell to randomly mutate during gestation. He found a community of supercharged companions who shared like experiences with his very rare syndrome.

The classic expression that another door opens when one closes describes his reality, his story. Today, Seen, yet Not Heard has grown into several distinct endeavors. Leaving decades of content on his original website, he established [ serenity’s quest ] to gather his poems and prose. [ Front Porch Conversation ] now gives him a distinct outlet for his writings on life and vitizen philosophies. [Ed Comp ] memorializes his charitable service to an amazing public-school based Arts Education School in Southern California. [Seen, Yet Not Heard ] became an exclusive space about William’s collaborative journey with discovery in and advocacy for Congenital Vascular Anomalies; for those born Rare and needing comprehensive and timely Care.

William created the first in world comprehensive and integrated chat-room service that is designed around small. intimate safe-places where the K-T Community can self-select to participate in confidential membership-driven talk groups with those sharing their common medical dispositions; meaning women talking with women, men talking with men, teens, talking with teens, parents talking with parents, medical professionals talking with medical professionals, and advocacy leadership talking with advocacy leadership.


Hot-links to several endeavors that grew out of the original efforts to learn and inform

care4-rare – advocacy / leadership

care4-kt – blueprint for a new-age support organization

talk.kt.confidential – general membership (serving as a pathway to smaller talk groups)
[FB]