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rainbow 07-08-2004 04:15 AM

Newbie first thoughts

I am a 49 years old female, have just discovered this site/discussion forum and have been reading through the various topics and just thought I'd post a bit of background.

I have a pws on one side of my upper lip between the lip and the nose. As a child I attended Great Ormond Street hospital who advised camouflage and leaving it alone.

I then went back to Great Ormond Street as an adult with my husband to see what advances had been made and came away still deciding to do nothing.

After having my three children and separating from my husband (nothing to do with the pws) I went to the Lister Hospital to enquire about Laser treatment. The consultant wanted to do it on the spot but I wasn't sure and was rather put off by his let's just do it now approach.

My husband has now died and my youngest child is 18, so I am thinking once again whether to have any treatment done. My pws has now become darker than when I was younger and has developed one round spot like lump in the centre (is this cobbling) which I have had for several years and is beginnin g to slowly increase in size plus another lump which is beginning to form under the skin.

I will revisit a specialist to decide whether to opt for treatment but in the meantime am fascinated by this site. I would just like to say that, despite all the insecurities and shyness associated with a facial birthmark, I have so far lived a full and active life. The camouflage make-up I have applied since I was a teenager has minimised any comments/staring, I had a reasonable amount of boyfriends before meeting my husband and getting married. I have produced three lovely children, only one of whom had a strawberry birthmark (don't remember the technical term) on his tummy which totally disappeared at a young age.
I am mainly interested in discussions with people who suffer from pws and hearing their stories as, strangely, I have never yet encountered another sufferer. I would also be interested in any information about support groups as I would be fascinated to meet some other suffers face to face.

Just one tip for any teenagers out there who are squirming with embarrassment about their pws although I know that I am lucky in that my patch is comparatively small and this would therefore be much harder for sufferers with larger patches.
As an adult, I have managed to cultivate a mental state of having "no sense of self". Its a neat trick if you can manage it and on a good day I can. Just take all your thoughts and insecurities about your appearance and mentally shut them away in a box. Then REALLY look at the person you are talking to and concentrate totally on what they are saying to you and what you feel about it without letting any of your shyness or insecurities into your mind.
You will be amazed at the response you get from people and will also experience what it is like to feel like a confident person without a pws.

I think if YOU can ignore and look past your pws, so will other people (My kids could never tell me whether I had remembered to apply my make up without looking at me when we went out because they had ceased to see my mark).

Really pleased I found this site and best wishes to all.

Jin9084 07-08-2004 02:36 PM

Re:Newbie first thoughts
Hi. I have a child with pws and sws. As far as the blebs you are describing from everything I've learned that is cobblestoning. There is a support group just for pws the link is There is a lot of adults on there and parents of child with pws. The site has just been update and you have a place to put your personal web page on there. Several people already have so you might find that intreating. I'm so glad you found us here. I hope you have a wonderful day. :)

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