can port wine stains spread???? - Vascular Birthmarks Foundation Forum
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Old 06-27-2004, 02:36 PM
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Default can port wine stains spread????

my 2 year old niece has sturge-weber-syndrome, it has been a long hard road for so far with the seizure's and port wine stain lazer surgery . can the port wine stain spread, it appears to be spreading from her face to the back of her neck and now down her back, is this part of the diease or something new.. she is being sent to a specialist in cancer and blood disorders, has any one come across this before.. we are just a little confussed, :-[
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Old 06-27-2004, 07:33 PM
nickbar nickbar is offline
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Join Date: Aug 2003
Location: Pacific Northwest
Posts: 1,054
Default Re:can port wine stains spread????

I would highly urge you to contact Linda Shannon.

Her email address is
put in the subject line: Corinne told me to email you!

She can give you more information on port wine and the spreading issue along with SWS. I do know of another case similar...and it is a puzzling case. I think she would be very interested in hearing about your neise.


Corinne Barinaga
VBF Director of Family Services
vbfadvocate @ live. com (no spaces)
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