… klippel who & port wine stain what?

Was your beautiful child born with muted red and deep purple stains on their skin?  If so, are you noticing patches of color that vary in size or maybe even extend from head to toe?  When you asked the doctor, did he/she likely described these mosaics as Port Wine Stains, Vascular Birthmarks, Birthmarks or Hemangiomas?  Did your doctor give you a preliminary or speculative diagnosis, say Klippel-Trenaunay Syndrome.  In any case, I’m sure your level of curiosity is heightened because you don’t recall seeing other babies with similar anomalies.

I understand your interest.  If you stumble around my journal here, you’ll see that I have a deeply personal interest in helping kids and parents with Klippel-Trenaunay Syndrome, including Port Wine Stains a common manifestation of this congenital aberration  Born in 1954, I too had a similar mosaic of color.  My parents were equally curious.  In their day access to quality medical information about babies like us meant they were given wrong information about me. 

Good news.  Today you have access to very informed doctors these days, albeit they’re only a handful, but they’re outstanding.  Also, you will soon meet street-level friends in the World Community.  It’s a virtual (in every sense of the word) neighborhood of soon-to-be friends.  These are KT-kids, as well as their parents, who have lived through the days when little was known and therefore are motivated and happy to share the things they’ve learned along the way. 

You can also find many wonderful resources listed here as various links to support groups and doctors.  A resource created by myself with the contributions of many is made available at no charge to the Klippel-Trenaunay community – look for the copyrighted name K-T Connections.

Please count me as one of your new K-T friends

You’ll soon realize that you’re raising a her.  Your child will show you strength of character many people will never understand and evidence of that strength will be your baby passing off the difficult as routine.  I respectfully submit that given a chance at a healthy and balanced childhood your baby will see themself as simply another kid in the neighborhood.  Yes, of course there are things they will do and things they will adopt to better fit into the picture, but what kid doesn’t do that anyway.  Quite frankly, friends and strangers rarely took notice or cared to call me out on my funny looking legs.  I kid you not – I was regularly ridiculed about my big ears and big smile.  I was all teeth and ears.  These more regular distractions left m  e little time to over worry about having painted legs.

If you haven’t already, please seek out Vascular Surgeons and Intervention Radiologists who advertise Klippel-Trenaunay Syndrome in their Resume’.  The K-T Connections directory may help you get started on this endeavor.  As a general rule, avoid Dermatologists.  I mean these talented folks no disrespect, but their expertise goes basically skin deep (humor intended) and you’ll learn soon enough that Klippel-Trenaunay is a deeply systemic, deeply complex, multi-system disorder.

Congratulations on parenthood.  Feel free to ask away.

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KTS kids ©2011
K-T kids ©2011

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