I would like to hear if anyone has the KS syndrome or PWS, that have had their veins removed. I need to know if that helps the pws? I have been informed that lazer treatment does not help. Can anyone please help?
Are you talking about Klippel-Treanuay Syndrome? I have just recently discovered I have this but very mildly. (One leg just slightly larger than the other, venous issues and a giant portwine stain that is very light pink clouds covering the back of my right leg.) I am going to a doctor here in Dallas to talk about one prominent vein that is bothering me. I will let you know.
I live in New Zealand and I have a large port wine stain, that covers the right side of neck and goes right around the back of my neck and covers a small portion of my back and shoulders. I hate it but there is pretty much zilch I can do to have it removed as I live quite a distance away from a medical centre that removes birthmarks and I do not have the money to pay for such a treatment.
I would however appreciate any information regarding the cost's of birthmark removals, the names of hospitals in New Zealand that remove birthmarks.
I do not have information specifically on New Zealand. But, you might want to look into laser treatments. PWS cannot really be "removed"...but laser is a very helpful tool in lightening it and keeping it at bay.
VBF Director of Family Services
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An international charitable organization that networks families affected by a vascular birthmark, tumor, or syndrome to the appropriate
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supports research and programs that promote acceptance for individuals with birthmarks.
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