Vascular Birthmarks Foundation Forum - View Single Post - Are Port Wine Stains Ever "Cured"?
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Old 01-07-2007, 08:47 PM
maisiesmum
 
Posts: n/a
Default Hello Hank



Hello Hank, I have been trailing this site for the last 8 months but have never posted but have decided to do so now. Your posts have been my inspiration through a horrific journey.

My prescious baby Maisie was born with an extensive port wine stain covering her right arm, hand, chest and back. We have had so many different diagnosis, but finally got a fantastic hospital and a diagnosis. They beleive Maisie may or may not have Klippel Treanuay Syndromme, they say time will tell, if she has it its only the mild form hank, it just means her arm may grow longer and or fatter. She also had displaced thumbs and im waiting to see a hand surgeon about that.

Hank, me and my partner are in bits, she is due to have her first laser in 4 weeks we have been told that it probably wont work, as its so extensive, other things are she may have to wear a compression stocking on her arm, and she can never go on the pill due to the clotting factors (NOT THAT ANY MAN WILL BE GOING NEAR MY DAUGHTER) ha ha ha!!!

HAnk, I find so so so hard, are the stares, the comments, and in the summer people were asking me had she been sunburnt. I have tried everything in my power to not let it get to me,but im such a sensitive person, that i feel every stare like Im being stabbed in the heart. Hank Im so ashamed to say this but I just had a nervous breakdown, due to all the worry and stress. I cant help being upset. I keep blameing myself, did I do something wrong, did I eat something wrong!!!! My familly are not understanding at all , all they say is well shes not going to die, and its not on her face...... so what I say, its still disfiguring!!!!!!!!!!!!!! I never want my daughter to hurt.

The plan of action is they will do 3 test laser treatments on her if it works sje will have every 3 months for 3 years which will tackle it all the once, and then see how it goes.......................... I HATE IT. I need to accept it i know, have you always been so accepting of it, or does it take time.

I value all your opinions on here Hank and would love to hear from you, and congratulations on your engagement!!!!

Tracy x
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