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Old 04-12-2006, 02:06 PM
Matt1331
 
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Default Need help with helping a friend

Hello,

My friends and I have a friend who has a skin condition that we have always thought was a birthmark, but in reality we have no idea what it is.* He has problems dealing with it and has struggled socially as a result, often times becoming depressed and feeling like an outcast.

My friends and I would like to help him deal with it and are willing to help him financially seek treatment (if possible), but we don't know what it is or really have a good idea of what it is and given the depression we don't think we should go directly to our friend until we have a better idea where to start.* So we are looking for some help in idetifying the condition and searching the web hasn't really helped so I stumbled upon this website/forum and wondering if we can get some help identifying the condition here.

He has had the condition since birth and we remember back when we were young asking him what the deal was and he said at the time it was a birthmark.* It's red blotches and scarring on his face, typically on the forehead and around the eyes/upper-cheek, at it's worse it can appear to be darker, like purple.* It has gone through periods where it's really evident (throughout his whole childhood it was really evident) and then times where it hasn't totally gone away, but a lot less evident, but then will come back again (never as bad as when he was a kid, but very clear that he had some sort of skin condition, he is 29 years old now).* As I said he said growing up that it was a birthmark, but it does move around as far as where it is located on his face and severity comes and goes.* We are unaware if it shows up on any other part of his body as none of us recall a situation in which we would have seen it if it was on other parts of his body.

Does anyone have an idea of what this condition is?* Any help would be appreciated.

Thanks,
Matt
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  #2  
Old 04-12-2006, 09:20 PM
hankbartenbach hankbartenbach is offline
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Join Date: Oct 2002
Location: Nebraska
Posts: 533
Default Re: Need help with helping a friend

Hi Matt,

I am a 23 year old with facial PWS (port wine stain) birthmark.

At first it sounded like your friend has a case of PWS, but the fading and darking does not normally happen. When angry, active, or anything else my PWS gets darker but it goes back to it's normal color.

Do you have any pictures of your friend that you can post here? If not and want to compare my pictures with his mark you can see them on my website www.hankspws.com

Since I am not a doctor I can not diagnose him properly. There is a couple things you can do.

First, go to the resource section at the top of this page and find a physician in your (or his) area or is driving distance and get an opinion from a specialist.

Second, go to the front of this website and ask one of the experts about this condition. Probably Dr. Liviten Ask the sergeon, or Dr. Nelson Ask the PWS expert would be your best bet to get. You will need to send pictures though because you do not know the extent of his condition.


If his condition is close to, or in either of his eyes he could have a very good chance of having glaucoma. If it turns out that he does have PWS he has even a higher risk of glaucoma. I strongly suggest talking him into getting his eyes checked out by a opthomologist in his area either way. Going blind (which I am but not from glaucoma) is even harder to deal with then haveing PWS. Glaucoma sneeks up on you with out even knowing you are loosing your vision. I know a few people that have lost their eyes to the condition so please convence him to get them checked.

If he ever wants to talk I am here for him, or if he wants to email me personally he can do that also. My email is in my profile. Birthmarks are hard to live with, but there are still ways to live a healthy normal life.

I hope this helps you and your friend.

Hank
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  #3  
Old 04-12-2006, 09:46 PM
Matt1331
 
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Default Re: Need help with helping a friend

Hank,

Thank you so much for the reply and the link for help.

Your condition and my friend's do like very much alike and when I first read up on PWS, I thought maybe that was it, but as you said, the fading and then it comes back does leaves the door open a little bit.

I will see if I have any pictures to post, I might have to scan as I know I have some pictures from him when we have been out golfing and at social events (weddings, etc...) together.

I will also take you up on your advice to get more information and use the resources available on this site. He has been seeing doctors since he was a child and there has been some help and the condition isn't as prevelent as when he was a child, it seems to get better, then it comes back a little. It's tough and we've seen him really struggle with dealing with it lately and that's what inspired me seeking out his condition so I can understand and continue to help.

Thanks again for the reply, I really appreciate it.

Matt
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