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Old 09-27-2006, 07:21 PM
Posts: n/a
Question New here and have questions

Hello! I am very new at this so please excuse any mistakes. I am 33 years old and have a PWS on left side of my face ( eyelids,nose,forehead,scalp and mouth). I will be going to the doctor next week. I know my insurance will say no so I am already feeling dissapointed. My whole life has been taught to cover and ignore so I don't know much about anything and just wondering if anyone can give me any positive advice.

Thank You
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Old 10-02-2006, 02:52 AM
hankbartenbach hankbartenbach is offline
Senior Member
Join Date: Oct 2002
Location: Nebraska
Posts: 533

Hi lijoy,

First of all welcome to the group.

I am a 24 year old with facial PWS/SWS.

I completely understand what you are going thru. Living with our condition is not the easiest in the world.

I want you to know that there is light at the end of the tunnel for everybody. Sometimes it just takes time. My life has been like a roller coaseter ride. If you would like to read about me you can visit my website at I have before and after pictures from laser treatment and plastic surgeries. I have links on my website of other people's personal websites. You can also find some of these same websites on this site as well.

I hope to hear more about you soon.

Good luck with your appointment.

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Old 10-02-2006, 10:28 PM
nickbar nickbar is offline
Senior Member
Join Date: Aug 2003
Location: Pacific Northwest
Posts: 1,054
Default insurance

I hope things start to feel better for you. I take the first or even maybe the second NO from your insurance co. There are examples of coverage won on this site and others. Let me know if I can point you to the example letters.


Corinne Barinaga
VBF Director of Family Services
vbfadvocate @ live. com (no spaces)
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Old 10-06-2006, 05:31 PM
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Default Thanks!!!

Thank you for talking to me . I haven't been able to get on the computer for awhile.My appointment is today and I'm so nervous. Leaving the house without my makeup is the scariest thing for me. I will get back on later and talk about how it went.Lijoy
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