Adult with PWS - should I treat?? - Vascular Birthmarks Foundation Forum
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  #1  
Old 06-24-2009, 04:47 PM
RowdyBliss RowdyBliss is offline
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Default Adult with PWS - should I treat??

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.
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  #2  
Old 06-24-2009, 05:05 PM
missy missy is offline
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Oh, yes, I think you should bother.

The thing is that treating it will help prevent future cobbling and blebs. Your insurance should cover it as preventative care, but if you need help negotiating that, ask our insurance expert at
http://birthmark.org/experts.php

I do not know if darkening is a sign of medical issues, though... someone else will have to chime in on that.



Missy
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Old 06-29-2009, 07:03 PM
RowdyBliss RowdyBliss is offline
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Thanks, Missy. Guess I'll be talking to my doc this week!

Again - what a great forum. I'm learning so much!
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  #4  
Old 06-30-2009, 01:07 PM
missy missy is offline
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Thanks.... like our new look?

Keep us up to date and let us know what you decide to do. Come back often!!

Missy
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  #5  
Old 07-04-2009, 07:54 AM
Aussie legs Aussie legs is offline
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Hi Rowdy, my name is Ann I started my treatment when I was about 27, I have had some good results on one leg & the other one is working but its taking a little longer. I have treatment every 3 months for the past 13 years on both legs and glad that I decided to go ahead with it. I think I would be always wondering in about another 10 years if I didnt go ahead with it what might my legs be looking like now. The laser stings a little bit but I think on the legs its not as bad as if you had to have it on your face, your skin and nerves must be more sensitive on your face. I'm 40 now and still have another 10 years to go, so as long as you realise that it might take awhile. A lot of my friends think you have a couple of treatments and thats it. Well as long as you know that it might take you years before you get the results you are after. And the costs depends on where you live, here in Australia I've been lucky enough to be covered by medicare and I havent paid out a cent, but if I had to pay for my treatment for the past 13 years at 1700 pulses (thats how many I have per treatment) I might not be able to afford it.
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  #6  
Old 08-18-2009, 05:50 PM
kkent kkent is offline
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Smile Another adult (almost 30) with no info on PWS either

Hi there,

I am almost 30 with PWS on my face. Having a tranatic childhoom with the taunting of other kids.. and as an adult will not leave my house without makeup. Going camping.. won't leave the tent until I have it.

My boyfriend didn't know for the fist year of our relationship.

So I am too just now looking into getting it treated, when I was young my mom made no deal of it. I have always been bothered by it but never knew of the medical information behind it. Just assumed it was just a discoloration of the flesh.

Just here for support.. birthmarks.com has a TON of great information that I have just been getting into.

I have an appointment on saturday for a consultation on my PWS having it removed with Perfecta. I'll be back to let you know what they say!

Good luck.. and there isn't a ton of information out there.. fortunately there are a few sites with the information that is essential.
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  #7  
Old 08-20-2009, 03:26 PM
RowdyBliss RowdyBliss is offline
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What a great, supportive group you all are. Thank you!

Haven't yet gone to the doctor as life is getting in the way, but I hope to go sometime in October when life calms down a bit. I wasn't planning on starting treatment until the New Year, but the other day I noticed I was bleeding from my ankle, where there are a lot of little bumpy things on my birthmark, which I guess are blebs. I have no idea how I started bleeding or what caused it - but if it's birthmark-related, I definitely need to start sooner rather than later.

I'm a little nervous about insurance covering treatments, but I'll check out that link.

Thanks again, everyone.
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  #8  
Old 08-20-2009, 11:51 PM
missy missy is offline
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I would think that if it is bleeding, insurance should certainly cover it?!?

Anyway... good to see you again. I do hate it when life gets in the way!

Missy
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  #9  
Old 08-29-2009, 12:18 AM
Judykay4444 Judykay4444 is offline
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Default insurance

I've had many treatments, from Cleveland, OH to Tampa, FL to Nashville, TN over the span of 18 years (not consistently) and have had different jobs and different insurance plans. I've never had an insurance company NOT pay for it.
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