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  #1  
Old 07-21-2003, 07:43 PM
neo
 
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Default largest mark ever ,prove me wrong

hi i have what i think is the largest port wine stain ever.the whole off the left side of my body ,except for my face ,thank god. but its been hard growing up with it. would love to know if any children have a high chance off getting it .anyone got any answers?
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  #2  
Old 07-22-2003, 05:59 AM
hankbartenbach hankbartenbach is offline
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Join Date: Oct 2002
Location: Nebraska
Posts: 533
Default Re:largest mark ever ,prove me wrong

Hi Neo, my name is Hank.
I have allot of PWS but I have seen worse.
Just last week when I went to a Sturge-weber confrence I meet to guys that had body marks. One was 75% covered and the other was 60% covered. They where head to toe covered. If you want to talk with either of them I could give you there email and you can talk to them. I know they would love to talk and share stories. I would like to get to know you as well. I know what you have gone thru people asking questions and staring. I have been there and done that.
I hope to talk to you soon and if you have any questions just ask.

Hank B
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  #3  
Old 08-26-2003, 07:44 PM
EGs Dad
 
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Default Re:largest mark ever ,prove me wrong

Neo:
My daughter who is 18months and also has SturgeWebber has a PWS on over 80% of her body. Her face, left arm and chest, left hand, back, butt, most of the left leg and some of the right leg and both feet. She is having laser surgery in Dallas and is experiencing some fading on face, arm and back. The legs and are not fading. She has had 14 surgeries to date and probably will have 14 more before it is all finished.

Her pesonality more than makes up for it but I am concerned for her as she grows up.

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  #4  
Old 08-27-2003, 05:36 AM
mamalamb
 
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Default Re:largest mark ever ,prove me wrong

Hi EG's Dad,

We live in the Dallas area as well. I hope the laser treatments are going well. I know it must be difficult dealing with both the large area and the sturge-weber syndrome.

Our dd's neuro was ES Roach, but he moved away a while ago. Who are you seeing for the sws?



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  #5  
Old 03-29-2009, 05:55 AM
JulesBL82 JulesBL82 is offline
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Join Date: Mar 2009
Location: Southern Illinois
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HI, I know this is an old post but I thought i would reply to it anyways. I'm 26 years old and I have a PWS over 80% of my body. It's on the pa;,s of my hands and the bottom of my feet the only place it didn't grace it's presence with was my left breast and most of my face. It grew up in a county of about 8000 people so it wasn't a big deal. Alot of people knew me and didn't ask question but when i met someone new or went to the doctor they would always freak out like I was having a bad allergic reaction. I got alot of stares my whole life but who doesn't? Even my husband noticed it when we first started dating and he was so afraid to ask me about it..lol.. about a month or two into our courtship he asked if I had some disease.. I had to explain it to him, but hey.. He didn't care because he dated me with out knowing what it was.. he's such a great person!
But I recently had surgery on my neck and shoulder and they took out some muscles and a rib but before I had to have a heart cath thing into my chest to make sure a hemangioma wasn't going to complicate things and thank Jesus I didn't have a tangle of blood vessels there. I do have to say the older I get and look back at pictures the "Purple" stains have become more red and they aren't as noticable. I'm proud of my birthmark and not ashamed. It really has made me a stronger person. Looks aren't everything!
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  #6  
Old 07-08-2010, 05:24 PM
citizen_in_malta citizen_in_malta is offline
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Join Date: Jul 2010
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Default port wine stain

I live in Malta (a small island in the Mediterranean sea) and I have a birthmark for sure and (think it's a port wine stain - because even the dermatologist wasn't sure) from the right part of my bottom and all around my right leg. I rarely wear skirts or shorts in Summer and my childhood was the worst time in my life, having to wear school uniform - skirts. I have went to several dermatologists in Malta and no one gave me advice for laser treatment as they have never saw such a large birthmark.

What I notice is that when I am tensed the birthmark turns darker in color - it turns to purple. However when I'm relaxed in bed the color fades. Also when I rub the skin where I have the birthmark, the birthmark completely fades away, however a few seconds later, the stain returns as if I have lot of blood being pumped under the skin. Does anyone in the world has this type of birthmark and is there a solution to this - hopefully not that much expensive?
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  #7  
Old 07-08-2010, 11:42 PM
missy missy is offline
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Get in touch with Dr Tombris, the european expert at http://birthmark.org/experts.php and see what he recommends. Perhaps he could consult with a local derm. It sounds like a PWS but it needs to be evaluated.

Missy
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