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Old 09-02-2012, 04:51 AM
lisaj lisaj is offline
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Join Date: Sep 2012
Posts: 2
Default painful - any ideas????

So, I am 32 and I have a PWS from hip to toe down my leg. I had NO idea there was a group out there dealing with this. Can I say how amazing it is??? I have lived with years of doctor's visits, surgeries, marriage and pregnancy with a birthmark. Luckily for kids born these days - technology has advanced GREATLY. I do have a lot of great stories and would be happy to offer advice on a later post BUT I currently have a QUESTION.... i recently moved to texas - away from my amazing doctor - so I know I have to find a new one here. BUT i didn't know if anyone older has experienced pain with leg PWS. I work a job where I am on my feet all day - at the end, my leg is in agonizing pain, swollen and just throbbing. I don't know what to do other than to find another job - which is what I am working on. any treatment suggestions or ideas? also - is disability an option???
Thanks in advance!!! sorry for my long post.
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Old 09-02-2012, 01:25 PM
missy missy is offline
Join Date: Apr 2006
Posts: 1,794

Hi and welcome!

You don't say if you've tried a compression stocking, and, honestly, I don't know if that's appropriate or not. But you can't continue to work that job if it leaves you in pain every day.

I couldn't say, also, if disability is an option. If you call your local department of disabilities, they would be able to answer your questions about that. I do know of one or two PWS patients who qualify for some type of disability, but their birthmarks cover most of their bodies and require extensive treatment.

Glad you stumbled in! Other people will chime in soon, as well.

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Old 09-02-2012, 04:55 PM
abatie abatie is offline
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Join Date: Oct 2009
Posts: 240

I would also suggest compression socks. You do need to find a new doctor ASAP though so that you can find out if there is a more appropriate option. Hopefully you can get some relief until you find a new doctor. I know that can be such an overwhelming undertaking. Best of luck!
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Old 09-08-2012, 05:50 AM
ElizabethO ElizabethO is offline
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Join Date: Aug 2012
Posts: 3

@lisaj, can I ask what type of surgeries you've had to get with your pws?
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