Hi, everybody - new here. What a fantastic resource! You folks are awesome!
I'm an adult with a PWS that covers about 45% of my right leg/foot. Like most people, it changes colors with temperature... fades when pressed on... etc. etc. etc.
Growing up with it was never a problem. My parents more or less ignored it and, thus, so did I. They never made a big deal out of it, just figured it was "one of those things" - and when I was little (late 70s, early 80s), laser treatment was still very nebulous and very expensive for poor family like mine. So we let it go. Sure, I got teased a lot, but thankfully I'm pretty tough - and can dish it out, too! - and so I'm not especially self-conscious of it. I always had plenty of non-judgmental friends - some of whom thought my birthmark was actually cool,
and dating was never an issue - at least as far as the PWS was concerned...
Honestly, I never even think about it until someone says, "hey, that's some rash!" or "do you have psoriasis?" or "wow, you've been out in the sun too long!" (Raise your hands if any of you have heard this before!!
) Over the years, I just learned to ignore it. As an adult, when I first started going to my regular family doctor, he merely found it to be "remarkable," made a note in my chart and nothing more was/is said about it.
This brings us to now. I'm noticing that this birthmark is darkening. No pain or nodules or cobbling or anything like that - maybe
an occasional circulation issue (leg falls asleep!), but it's definitely darkening - my brother, whom I hadn't seen in a while, noticed it, and when he did, so did I.
I mentioned this to my dad and stepmom (dad remarried last year), and my stepmom - who also has a PWS on her face that I never noticed because she uses makeup and has had treatments - told me that I should go get treated, that any change to the birthmark is probably not good, I should go have it looked at, etc.
Of course, now I'm sufficiently freaked out. At 33 years old - should I bother? Even though I have no problems with it now, should I treat anyway? Is this darkening a sign of bad medical issues in the future if left untreated? I know it's probably painful... what's that like??? Is it worth it???
Also - how does it work with insurance? Is this medically necessary or merely cosmetic?
I know I'm asking an awful LOT of questions, and I'm sorry for firing away like this, but 33 years is a long time to live with a PWS without any information whatsoever!
To those who have read all this - thank you! Any and all advice would be really helpful.