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michelle.karim 11-04-2005 12:27 PM

Vascular malformation/port wine stain treatment
My son, who is now approaching 9 years, was born with a vascular malformation over his left hand and arm. He was referred to Great Ormond Street Children's Hospital in London for diagnosis. He was seen by Dr Harper of their Birthmark clinic who told us not to be concerned and that should Sam decide later in life to have it "removed" by laser this was not a problem. On reading your website, I see that it is recommended to begin laser therapy as early as possible. I am now confused?

hankbartenbach 11-04-2005 07:08 PM

Re: Vascular malformation/port wine stain treatment
Hi Michelle,

I am Hank 23 with PWS.

Here are two doctors in London that might be able to help you.

Dr. Richard Barlow
St. John's Institute
St. Thomas Hospital
London, England

Dr. Karen Healey
St. Thomas Hospital
London, England
Att: Angie, Dr. Healey's Secretary 001144-1232-618-737 (phone) 001144-171-922-8186 (fax)

Most doctors want to take the wait and see role because they either think that it might go away on it's own or they are not educated enough in that kind of birthmark.

The two doctors above are in the physican section of this website.
I would strongly suggest getting a second opinion. Some doctors are very advanced in PWS/VMs. You just need to find the right one.

If you have any other questions please ask we are here for you.


nickbar 11-05-2005 08:00 AM

Re: Vascular malformation/port wine stain treatment
I would encourage you to email the "expert" on PWS/laser Dr. Nelson for his opinion on this question as well. The physician's list are doctors that other patients have recommended, but the VBF doesn't endorse them and we don't know for sure what each doctors' philosophy is. THe lis of doctors is a reference guide to help people find someone in their area.


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