Parkes Weber Syndrome - Micro fistula - Vascular Birthmarks Foundation Forum
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Old 08-09-2010, 03:33 PM
fammie fammie is offline
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Join Date: Aug 2010
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Default Parkes Weber Syndrome - Micro fistula

My six years old daughter has micro fistula (red veins) on her right hand, right breast and her right back. We have been told any treatment would make her condition worse (alcohol, laser) since there are all small veins. Her right hand is very hot. It is longer than her left side (two centimeters) and the size around her arm is four times bigger. (Her left hand is size 8 and her right hand is size 16) Since winter she showed shortness of breath after her dance lessons. All her body was hot and feels like burning.
We passed on social problems that she goes through every day at school, and the appearance. Just worry for her heart.
Want to know if anyone has knowledge of a similar case and could share it with us.

Thank you
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