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Old 02-06-2009, 05:00 AM
monkeymoo monkeymoo is offline
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Join Date: Feb 2009
Location: near Kansas City, MO
Posts: 4
Default Adult with PWS -nd medical advice, no insurance

Hi all,

I'm new to the forum having just found it today. I'm 40 and have a very large PWS over the upper right third of my body. Lots of issues with it, which I'd like to discuss with a doctor. Unfortunately due to having just moved back to the US, I have no medical insurance (nor can I afford it as looking for work right now).

Does anyone know of any resources for adults who need treatment but have no insurance? There's lots of things for kids and their parents I see, but at 40 I don't qualify for that.

Any advice appreciated.


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Old 02-07-2009, 10:06 PM
becauseofhim becauseofhim is offline
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Join Date: Jan 2009
Posts: 3
Default no insurance

Try looking into medicaid, they cover port wine stain therapy if you go through a plastic surgeon at a major hospital that accepts medicaid.
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Old 02-11-2009, 06:47 PM
hankbartenbach hankbartenbach is offline
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Join Date: Oct 2002
Location: Nebraska
Posts: 533

Hello Deb,

Welcome to the group.

I am 26 with a facial PWS that expains almost 3/4 of it.

I had a quick question for you have you ever heard of Sturge Weber Syndrome?

I have SWS because of my PWS. My PWS is calcified into my brain and it is internal. I have it in my eyes, ear gums noise, and who knows where else.

Depending of exactly where your PWS there are serveral things that can relate back to SWS. If the PWS is on just your body/arms look into KT syndrome, if it is close to your eyes look into glaucoma, and if it is on your head calsifaction could be involved like it is with me which causes seizures.

For me luckily I grew out of my seizures when I was about 2 years old. I do not have glaucoma because I do not have high pressure, I have the exact oppoisite which having low pressure caused my detached retinas.

Since I do not know the extent of your PWS it is hard to say what problems could be linked with your PWS. But if you have never heard of SWS i would diffently look into it. Having a MRI with and without contrast is the only way to know for sure about and to be diagnose with SWS when it is involved into the brain.

I know several people with just KT and PWS, or just PWS that have other problems. Every case will be different.

As of for the insurance, other then medicaid, I would look online. There are several insurance companies out there just make sure they cover preexisting conditions because that would rule out any treatment PWS related.

I hope this helps,

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Old 03-16-2009, 11:13 AM
papstheman papstheman is offline
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Join Date: Jan 2009
Posts: 1


I have pws and sws. The complete left hand side of my face and my right arm are affected. I am 18 now and have had hundreds of laser treatments. Its still very noticable and my bottom lip is very large. Can anyone offer me advice and maybe where I can get surgery on my lip and ear as they are very big. I am getting desperate now as this is going on since I was born but I am not happy with the results at all. HELP!!
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