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  #1  
Old 10-15-2002, 03:58 PM
Harlequin
 
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Default new here

Hi - new here! I am a 26-year-old woman who has a GIANT port wine stain birthmark (I think?? that's what the doctor said when I was born) on my right leg which starts at my toes and runs up the back of my legs all the way up to the small of my back. I came to the this website to try to find out if/how this birthmark can be treated... years ago, when I was born, there really weren't too many options for treatment - plus, my family didn't have the money for the costly and experimental treatments then. However, I figure with the advent of modern innovations, treatment is probably a possibility for me now.

I look forward to seeing and learning much more here. Thanks to everyone who has made this possible!

Harley
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  #2  
Old 11-22-2002, 02:16 AM
ssklrk
 
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I'm new here too. My daughter has PWS. She currently gets pulse dye laser treatments. They have worked great. She has had wonderful fading. I had the doctor zap me one time so I would know what was happening to her. It was a very small pinch then it itched but I put aquafour lotion on right away and was fine. It never hurt or itched or burned after that. It did take awhile to get the insurance to cover my daughter. The shriener's were going to help her with laser's but then my insurance finaly gave in. The doctors were able to explain medicaly why she would benifit from the lasers. I've been told they hope that the lasers are actualy killing the extra blood vessels but it has not been proven yet. It truely is amazing how much they now understand about the PWS. My daughter see's a dermatologist, a genetic daughter and an eye doctor. Good luck to you.
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  #3  
Old 02-15-2003, 07:44 PM
oloalilo
 
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Default Re:new here

I noticed you had a hard time to have insurance cover it. I am finally going to see a doctor about my birhtmark I think its PWS, do you think my PPO will give me a hard time?

I am 39 years old and finally going in.. I am Samoan and of course they have their own treatment. When I was real small they used a procedure on me with a thorn from a lime tree and it is similar with tatooing with out using ink it is suppose to stop the growth and I think it worked because it never grew just got darker through the years. I just wanted to share that.

Anyways pray for me I will be seeing a Dr next Thursday using the Doctors listed on the resource list here from this website.

Take care you all
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  #4  
Old 04-01-2003, 11:44 AM
edc
 
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Default Re:new here

Hi! I'm new here too.

I'm a 24 year old girl living in the UK, and I too have a huge PWS. From the tips of my right toes, all the way up my right leg and halfway up my back.

My right leg is also larger than my left and i think this will cause me back probs inthe future. Just not sure where to start with all of this.

My friends say that i need to fix the leg length difference first but i'd prefer to get rid of at least the PWS on my leg, would totally change my life and my confidence! Dont get me wrong, I do have a great life, full of fun etc, but it does get me down when i dont want to go swimming or wear certain clothes in the summer.

Does anyone know any good docctors in the UK?
Oh, and I keep hearing about people saying that it spreads through age.. does this always happen?

Thanks all! x


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  #5  
Old 06-24-2003, 06:03 AM
Calico66
 
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Hi edc!

Charlie here.

If you don't deal with the PWS it will continue to make the leg grow faster.

Compression hose and laser treatment is all I know of right now, but they work!

Best of luck and life to you!

--Charlie
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  #6  
Old 10-31-2003, 02:58 AM
myportwinestain
 
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Default Re:new here

Hello,

I'm new to the forum. Recently I created a website to help people that were born with a Port Wine Stain birthmark and other skin problems such as acne. Thru the site I hope people will find interesting information to help them maintain healthier skin and gain back the confidence they deserve. I myself was born with a Port Wine Stain on the right side of my face. Please click on my link to view my story and helpful information to maintain healthier and better looking skin.

http://www.myportwinestain.com/skincare.htm
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  #7  
Old 03-07-2004, 12:29 AM
Lisa_99 Lisa_99 is offline
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Join Date: Mar 2004
Location: Madison MS
Posts: 48
Default Re:new here

Harlequin,
If you are still in this forum Pls email me.

thanks

Lisa
Mom of a 14 yr old w/ left side / torso PWS
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  #8  
Old 03-07-2004, 12:29 AM
Lisa_99 Lisa_99 is offline
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Join Date: Mar 2004
Location: Madison MS
Posts: 48
Default Re:new here


ooppps

My email is : msearp9@jam.rr.com

Lisa
Mississippi
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  #9  
Old 05-25-2004, 02:42 PM
planet
 
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Default starting treatment

Hi everyone,

I am 30 and have a PWS from my left toe up to the middle of my left leg, but I have never heard of it getting worse as you get older and am starting to panic. (i didnt think that could happen) I ve had no problems thanks to the invention of trousers and a very supportive family and have had longterm boyfriends and have a boyfriend now who really dont care about it. I was brought up on the south coast of England and went swimming and sunbathing alot and didnt care at all, but i decided in the end to see how this laser treatment would help as i live in a bit of denial about it since i can hide it well and i never wear skirts etc which is a pain when you are a girl! can anyone advise me what to expect with the laser treatment? it starts in 2 wks. Id also be more than happy to chat to anyone out there, cos i dont know anyone else that has a birthmark and its hard to explain how i feel sometimes to people


Look forward to hearing from you

Kathy
London
UK
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  #10  
Old 05-26-2004, 04:10 AM
nickbar nickbar is offline
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Join Date: Aug 2003
Location: Pacific Northwest
Posts: 1,078
Default Re:new here

Hi there, my son has a hemangioma so different than PWS...but I can tell you about laser has he has had 5 and will have 3-5 more.

When I first started researching laser (before we knew if it was a h. or pws) i thought it would be 1 treatment and the thing would be gone. NO...it takes multiple treatments depending on the color and responce to the laser. Lasers work well for PWS; however, unlike Hemangiomas the PWS can reappear. It is a great option though if you are ready. My son is put under general anethesia as it is on his face. Being that you are an adult they probably will just give you a cream pre-laser. If it is a large area, you might want to ask about g.a. From what the doctors say, it is like a rubber band snappking you. Well, might be ok for a really smal birthmark...but my son has between 155-175 pulses each time...I can't imagine being snapped with a rubber band that many times. Not trying to scare you away from it...it is an amazing tool to combate these marks. You will see dots of purpa (dark spots) after the treatment...in about 10 days they are gone and then you will see the lighter skin tone.

Good luck and I am glad you found this group for answers.
Corinne
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Corinne Barinaga
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