Living with PWS. - Page 2 - Vascular Birthmarks Foundation Forum
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  #11  
Old 03-17-2007, 04:43 PM
wantego
 
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Quote:
Originally Posted by Janny View Post
Hi
I have red birth marks on my left face. I'm 24 years old and i donnt know is it PWS or hemangloma. Mother never told me that I'm different, i'm not so care about it, but of course i hope i have not a stain on my face.

sorry if there are some expressing mistakes. Chinese is my mother language, this is my first time to post threads in English
Hi Janny. weclome to the board. Have you considered asking a doctor what you have? Your english is very good.
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  #12  
Old 03-18-2007, 10:29 AM
Janny
 
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Default Thank you.

Hi wantego, Thank you very much for your reply. You make me feel so good. I am a little shy to speak in English, for I'm afraid i might make mistakes and offend others. Thank you!

In fact I'm going through a treatment called photodynamlc therapy(PDT). My doctor say mine is PWS. Acording to discribes of other friends here about their symptoms of PWS, I'm not sure if it is or not, for some years ago a doc said mine is hemangioma. My symptom is, as time going, the colorof the stain gets dark red, and some part gets thicker.

Thank you!

Janny.
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  #13  
Old 03-19-2007, 10:29 PM
wantego
 
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Quote:
Originally Posted by Janny View Post
Hi wantego, Thank you very much for your reply. You make me feel so good. I am a little shy to speak in English, for I'm afraid i might make mistakes and offend others. Thank you!

In fact I'm going through a treatment called photodynamlc therapy(PDT). My doctor say mine is PWS. Acording to discribes of other friends here about their symptoms of PWS, I'm not sure if it is or not, for some years ago a doc said mine is hemangioma. My symptom is, as time going, the colorof the stain gets dark red, and some part gets thicker.

Thank you!

Janny.
Janny no need to be shy. You are one of us here. Please speak freely without worry. You will not offend us.
It sounds like you do have a PWS. I may be wrong but I think a PWS is actually a kind of hemangiona (vascular malformation). Have you considered posting a picture online so we may be able to tell you for sure? Good luck with your treatment. My doctor uses a Vbeam laser.
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  #14  
Old 03-20-2007, 05:14 AM
nickbar nickbar is offline
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Join Date: Aug 2003
Location: Pacific Northwest
Posts: 1,078
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I would also like to encourage you to email Dr. Nelson on ask the expert section of this website. you can send him photos and he most likely can give you an idea of what your vascular birthmark would be called. PWS are a capillary malformation. (hemangiomas are actually benign tumors).

GOOD luck with your diagnosis. And you write English VERY well.
Corinne
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  #15  
Old 03-23-2007, 09:53 AM
Janny
 
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Default Thank you all:)

Thank you all. I'm thinking about your advices. I never thought I could make friends here. You make me feel warmful.

Photodynamic therapy does work with me,the color changed from amaranth to light red(after two times PDT treatments), some places it faded. And there are examples that are cured. Now i'm quite optimistic with my treatment. There are still a long way for me to go through, and hard, too,for it is painful.

Good luck with your treatment, wantego, Thank you very much!

nickbar, thank you !

Last edited by Janny : 03-23-2007 at 09:57 AM.
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  #16  
Old 03-31-2007, 04:45 AM
sarah14 sarah14 is offline
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Join Date: Jul 2006
Posts: 8
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hey everyone.
thank you so much for all your comments!
it made me cry...but in a happy way because it's comforting to know i'm not the only one with PWS.

i'm in a school play where i have to wear a short dress. thankfully i got some panty hose and Dermablend. those seem to do the trick, because no one has mentioned my birthmark. !
i'm thinking of just walking around the mall with a skirt on that shows my leg. just to see what'd happen (if anything). i really need some courage, i'm sick of how this PWS controls my life. i'm definently going to try to overcome the embarrassment of my mark. so... wish me luck!

thank you all!!!!
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