Shortcomings - or - Why Klippel-Trenaunay Syndrome Is So Much More Than They Told Me It Was

So.  I have gone on and on about aching loneliness.  I would have to suppose that much of that feeling partly comes from my own greatest and very private, most personal physical shortcomings.  It is called Klippel-Trenaunay Syndrome.  I did not even know there was a name for my condition until recently.  I now know that there are only 900-1000 reported cases in all the world.  I have found it is dauntingly tough to find persons in the medical community who have even heard of it, much less treat it.

Basically, there is a vein present in a fetus that disappears before birth.  In Klippel-Trenaunay Syndrome, that vein did not dissipate, and becomes a vascular problem as you grow.  It is usually accompanied by some kind of birthmark, and is usually located in a leg.  I have a port-wine stain the size of my hand on my outer right leg above the knee.  My disease is basically an invisible disease - most people never know I have it.  Otherwise my leg just looks a little swollen.  The pain and havoc that is happening beneath my flesh is only seen to the observer as an occasional limp, sometimes worse than other times.

The picture above is so much more acute than my smaller birthmark and accompanying vascular complaints, but you get the idea.  Perhaps from this picture one can begin to comprehend the pain which radiates from the bottom of the foot, throughout the leg, through the pelvis and hip, and on up into the back.  The tortuous venous system resides right along with all the normal vascular system one would find in a leg.  The chronic deep aching, not to mention the shooting acute pains, never leaves you - not even for a moment.  The Syndrome also plagues the sufferer with blood clots which often break free and find residence in the heart and lungs.

As a child in the 1960's, I remember attending grade school in the required dress code...dresses for the girls.  My little purple birthmark was a source for endless taunting and ridicule from other children, including "friends".  I would come home from school frazzled and close to tears, never telling my parents what was happening.  At home I was soon labeled as over-emotional, and the rare times I let down my guard and tried to explain the ridicule and bullying that was happening at school I was also labeled an exaggerator. 

I have rarely worn a dress since the day that schools allowed girls to wear pants, even as an adult.  I have managed some modicum of fashion by wearing a longer dress with high boots, or the lucky occasions when a floor-length gown had been required.  But those ridiculing days of my youth have stayed with me always, and I have allowed myself to believe that I am and always will be undesirable.  Intellectually I know it's crazy... the men in my life that I have allowed to get close to me have been incredible.  To them my leg is not such a big deal, and they have always been right there when I have been in pain or in need of medical care.  I have had opportunities with some truly remarkable men - but I always remain that little girl who is mired in the shamefulness of not being a physically normal specimen.

Through the years, I found medical care through vascular surgeons and emergency rooms that really had no idea what was happening in my leg.  I was either turned away as having nothing wrong with me (my feeble attempts at trying to explain a double set of venous systems being met with assurances that there could be no such thing), or I was treated surgically - twice - by surgeons who mistakenly believed my ailments could be relieved simply by the attempted removal of those extra veins.

In my advancing years of 40 and beyond, I have been told that my chances of surviving any more blood clots is substantially reduced.  Suddenly I am acutely aware that I am not finished on this earth, that I have no desire to leave yet.  I must do whatever it takes to find the right persons that can finally recognize and thereby treat my poor leg.  Why is it that I can google my symptoms and find information and fellow sufferers, yet I have never found anyone in the medical community willing to take the time to do their own research before "fixing" me. 

This has been an expensive ailment.  I have not been able to receive health insurance since I was covered under my parents' plan.  Blood clots every few weeks, emergency room visits, and the occasional surgury were all paid for at 100% by way of payments.  At one point I was sending 60% of my income out for medical payments.  I was forced into bankruptcy at the age of twenty-eight.

I have created a website devoted to Klippel-Trenaunay Syndrome, simply for the sake of having a reference to mention to my caregivers:  Klippel-Trenaunay Syndrome

I have finally realized competent medical care by way of my local community health center.  My doctor in the specialty clinic has spent untold hours documenting this Syndrome.  I am now a lifelong member of the Warfarin Clinic, where my blood is thinned in an attempt to reduce deadly clots.  You guys know who you are, and you have my undying gratitude.  You rock!

I am haunted by recent headlines announcing a prominent journalist who has come forward with her story of dealing with Klippel-Trenaunay Syndrome.  I am grateful to her for getting the word out about this little-known disease.  Her name is Carla Sosenko, and it hurts my soul to read of her fragile emotions concerning her feelings of lack of desirability.  My wish for this young woman is that she finds her soulmate and is at long last reassured that she is most desirable after all.  Please read her story here... What The Guys I Date Don't Know

Blah, blah, blah.

Therefore, I shall...

Rock on.