I don't have a PWS but an arteriovenous malformation of the lip. Your story breaks my heart. I find that people with PWS have a great support group at www.birthmarks.com
Do you know it? They discuss social implications, treatments, etc. I've read their posts during about two weeks and I found them extremely interesting (like yours). But if you wish to come back here, of course please do so and we can talk again (all vascular birthmarks meet here, it is the founding site).