Vascular Birthmarks Foundation Forum

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-   -   can port wine stains spread???? (http://birthmark.org/board/showthread.php?t=770)

kokamo 06-27-2004 01:36 PM

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, :-[

nickbar 06-27-2004 06:33 PM

Re:can port wine stains spread????
 
I would highly urge you to contact Linda Shannon.

Her email address is hvbf@aol.com
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.

GOOD LUCK..

Corinne


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