You likely found us here because your baby was born with muted-red stains which turn deep purple at times and/or a doctor diagnosed your baby with Klippel-Trenaunay Syndrome. I hope this is a good landing spot for you. Welcome!
This article is the first in a series with an eye towards narrowing the information gap that K-T parents and K-T kids often talk about. Doctors delivering babies are often not familiar with K-T. Born in 1954, I wasn’t diagnosed until 2002. The journey thereafter was more frustrating than the unexplained life events prior to. Inspired to make a difference for the next K-T kid, we start here!
I respectfully share the following keynotes which are synthesized from years of listening and living the K-T life. These K-T keynotes* are:
- Be patient!
- Be positive!
- Build strength of character in yourself and K-T kid!
- Professional and timely diagnostics!
- Prevention of unnecessary or unwitting damage!
- Personal and parental advocacy, particularly when it comes to the medical community!
- Insist on professional diligence, system mapping, prevention and conservative care!
This K-T Kid’s Perspective
So what is a practical definition of Klippel-Trenaunay Syndrome? This deeply complex medical condition is:
- Foundationally active only during gestation;
- Principally defined by venous malformations;
- Supplementary defined by capillary and/or lymphatic malformations;
- Regularly queued by varying patches of light red and deep purple;
- Periodically queued by veins that look like there bubbling up to the surface of the skin;
- Periodically queued by limbs and/or torso overgrowth or missing appendages;
- Clinically identified using specialized imaging technologies;
- A congenital, non-inheritable syndrome;
- A hidden blueprint with a propensity for complicating post-birth maturation;
- A degenerative condition causing life threatening infections such as cellulitis and sepsis; and
- Often a contributing, if not the initiating, factor in muscle weakness, chronic pain, chronic venous insufficiency, locked joints, limb growth differentials, limb amputations, peripheral neuropathy, gastrointestinal bleeding, rectal bleeding, lymph blisters (commonly called blebs), stasis ulcers (commonly called skin ulcers), tinnitus, and other correlated conditions.
Klippel-Trenaunay is wickedly unpredictable. For reasons as yet unknown to doctors, the K-T mechanism turns on at different times and for different durations during gestation. Current research is focused on identifying the chromosome aberrations that are indicative of our syndrome. We’re extremely happy this research is ongoing. For a syndrome identified in 1900, doing so would be medical progress. A point of clarification for those that report the source of K-T has been identified (referring to 2004 studies), these are speculative findings. I’m reminded that correlation is not causation and these studies have yet identified, predictively how the identified mechanisms control or cause K-T. Further complicating concrete conclusions about Chromosome 18 are the times when the identified aberration on the chromosome doesn’t result in congenital aberrations.
What I See
The unique and varied appearances found in the K-T population may include babies with girth and length discrepancies at birth. A fair number of kids like me are born without these conditions. Some K-T kids develop these conditions as they grow. Others, side step these growth issues and their muscular-skeletal growth patterns are every bit as normal as those kids without K-T.
Adults with K-T almost universally experience early system degradation due to aberrant blood and lymph flow. In short, we appear to age a little faster than the general population once we hit mid-life.
The good news in 2011 is that we have several top-notch medical doctors who know Klippel-Trenaunay Syndrome. By all means I encourage parents with K-T kids to get to these as early as possible. You’ll find a product I developed called K-T Connections on this website. The Klippel-Trenaunay Support Group, otherwise known as K-T.ORG, is authorized to use the connections product and may publish it on their public service forums. This nonprofit group is the pioneer in K-T Support, originating in 1968. It sponsors a bi-annual convention open to all including parents, K-T kids and medical providers. Their public service forums include their corporate website, k-t.org, their facebook page, k-t.org, and their email support group service.
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*Seen But Not Heard ©2011 ®2011; KTS kids ©2011 ®2011; K-TS kids ©2011 ®2011; K-T kids ©2011 ®2011, KTS keynotes ©2011 ®2011; K-TS keynotes ©2011 ®2011; K-T keynotes ©2011 ®2011; KTS Connections ©2011 ®2011; K-TS Connections ©2011 ®2011; K-T Connections ©2011 ®2011