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  #21  
Old 10-29-2005, 06:36 PM
wahinelei
 
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Default Re: Do you really living with PWS?

Aloha Everyone~

I came across this website and just had to reply.* I am 32 yrs old with PWS on the left side of my face, neck, and chest.* I do wear makeup but not to cover up my PWS, just to even out my skin tone and because Im a girly-girl.* I did try DermaBlend once in my teens but it was so thick I never wore it again.* Covering up my PWS with makeup feels fake for me.* That having been said, if I woke up tom'w and it had disappeared, I wouldn't cry!*

Growing up and living with PWS has made me a introspective, sensitive, and caring person.* Stares and comments do not bother me now as they did when I was younger but they definitely did form me into the person I became.* Its kind of like being tested by fire and coming out on the other side.* You'd never willingly choose to do that, but you are stronger for it.* I have never had treatments and don't really feel at this late date that's its needed (of course, if it became a medical problem I would get it checked out).* If there had been treatments available when I was younger, I wouldn't have objected either!!

There is one area that I do feel self-conscious about and that is my chest.* I always wanted to be able to wear those low-cut, daring tops but have never been able to look at the mirror without seeing my PWS.* I do not know why seeing my face doesn't bother me but seeing my chest does!* Maybe as I get older, I'll have come to terms with that too.* Hopefully I won't be 80 years old and wearing low-cut, daring tops!!*

For all those parents out there, just love your child as he or she is.* Half the stares and comments wouldn't have bothered me as much, if it hadn't bothered my mom so much.* I know that she loves me and wouldn't willingly hurt me but to this day she still tells me that if she only had the money she would buy me laser surgery.* **@$#**!!* She still doesn't get it! >

Hope this helps!
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  #22  
Old 10-30-2005, 01:05 AM
hankbartenbach hankbartenbach is offline
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Join Date: Oct 2002
Location: Nebraska
Posts: 538
Default Re: Do you really living with PWS?

Hi,

Thank you for sharing with the group on your experinces. I know exactly how you feel with growing up witht eh stares and pointing. It does get old after a while, but there is not much you can do about it.

Hope to get to talk to you more.

Hank
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  #23  
Old 11-06-2005, 03:20 PM
ifritdoa
 
Posts: n/a
Default Re: Do you really living with PWS?

HI guys!

Well I`m a 21 year old guy with pws around my eye (to tel the truth it actually looks like a middlefinger if u know Wat i mean^^) Anyway, I do not have alot of self confidence (i have other issues with my life) which makes life pretty hard. but the thing is that sumtimes i don't give a crap Wat people think of me and then i get days where i just want to kill everyone that looks at me funny (not really). I`m a barmen which means i deal with the public and i get to meet al sorts of people! sumtimes the people cant even look me in the eyes which is really sad and sumtimes its like they don't even notice it (or they're just very good actors)

I`ve been single for a very long time and when i see sumone I'm interested in, i am highly discouraged by the fact that i have a pws, so basically I'm too ashamed!

I`m sick and tired of feeling sorry for myself but i just cant help it! I just want it to go away but it wont.
So i`m looking for support from the people i know wont give it. Hoping that when i get it from them it would be worth all the struggling.

I'm a hopeless case but I'm still alive and well. One thing that keeps me strong though is the thought of people who are in much worse conditions that I'm in and enjoying life much more than i am!
Those people are the true heroes of today! and i want to thank them all for giving me so much strength!

THANK YOU!!

David
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  #24  
Old 11-06-2005, 10:40 PM
hankbartenbach hankbartenbach is offline
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Join Date: Oct 2002
Location: Nebraska
Posts: 538
Default Re: Do you really living with PWS?

Hi David,

My name is Hank 23 with facial PWS.

I know exactly how you feel. I to have been single for a long time. People just do not understand what we live with on a day to day basis. The public is even worse. I have heard every comment in the book but I let it go in one ear and right out the other. (selective hearing) You keep your shoulders held high and not let anybody bring you down.

I have been in the same place with the dateing. We are affraid of rejection from the other person so we do not even try to get involved with the opisite sex. There is no way to say this nicely but you have to put your neck out there and try. Trial and err only can make you stronger as a person.

I look forward in hearing more about you and how you have delt with stuff in your life.

Talk to you soon.

Hank
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  #25  
Old 12-10-2005, 07:07 AM
mikeb23ft
 
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Default Re: Do you really living with PWS?

It's so strange for me to write about this. I've never thought about it so much before. I'm currently 20, I go to the University of South Carolina, and I have a PWS on the left side of my face.

I do live with it every day. Sometimes I wear makeup that makes it fade some, but it's just a really light concealer, you can hardly tell I have it on. My parents started treatment on my PWC when I was very young, when the technology was new and rudimentary. I'm pretty sure we started at Duke University. I don't know how old I was, but I remeber not having any anesthesia, and being held down so the surgery could be performed. Not pleasant.

Living with my PWC has been difficult at times. I do think about it every day. I think about how my life might be different were I not one of the .3% of people who have a PWC. I think about how much easier it would be for me to fit in everywhere. I think about walking around campus without people staring and how much less awkward everything would be if young children didn't point at me and ask their parents what happened to my face. If nobody asked who hit me in the eye. If women were more attracted to me initially. Just how things would be different if it weren't there.

Having said that, it hasn't slowed me down. I have been as socially normal as possible. I have dated attractive girls and functioned perfectly in socially demanding jobs at malls and restaurants. Sometimes I look in the mirror and I'm amazed that I get up and go outside every day. It has actually occured to me that if I saw someone with a similar PWC, I would stare at them without even realizing it, so I don't blame the gawkers. I don't know how I face being so different. For me it's just normal.

As far as the comments from my peers during my elementary and teenage years went...I always tended to react violently to them. I don't really suggest this policy but it has worked for me. I tolerate no one picking on me or making fun of me for any period of time regarding my birthmark. I'm not a violent person or anything, but once you let people know that it's not something that you want them to chide you about, they usually stop for good. I'm not really comfortable talking about it with people who I'm not very close to. I've realized that many people who I know don't even know what it is. My suitemate, who I have lived with in a dorm at USC for the past semester, recently asked me, very politely, how I burned my face. (I get that one alot.) I told him it was a birthmark, and I haven't heard anything else about it.

It is only as big of a deal to other people as you make it seem like it is to you. If you have a PWS like mine, carry yourself with confidence, and don't talk about it, I think that it truly dissapears in the eyes of people who know you. If you make it out to be a big deal, it will be a big deal to them, as well.

Anyway, I've had ten or fifteen laser treatments over the years, and I've seen fairly good resuslts, especially on my neck. I'm going to MUSC on Monday to have another treatment. I'll try to take some before and after pics to post on here. I wouldn't have any problem fielding emails or AIM questions about any of this. mike1242_99@yahoo.com and mikeb23ft on AIM. I'm sorry this got so long, but I'm glad I've stumbled on this group.
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  #26  
Old 12-10-2005, 06:26 PM
hankbartenbach hankbartenbach is offline
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Join Date: Oct 2002
Location: Nebraska
Posts: 538
Default Re: Do you really living with PWS?

Hi Mike,

Thank you so much for posting on this topic.

It brought back a lot of childhood memories. When I started laser treatment 18 years ago when I was 5 years old they had to hold me down by my arms and limbs. Worst part was to get to the Derm was a eight hour drive one way. Denver CO was the only place in the midwest that had a machine.

I know what you mean about thinking sometimes what my life would be like with out my PWS and other conditions, but the way I see it I would not be the person I am today if I did not have my PWS. It has made me a better person in so many different ways. I tend to take the road of educating people about the condition rather then becomeing vialent. If I am ever out with friends by best line to strangers when they ask me rodely what happened I say "You think this is bad you should see the other guy he is still in the hospital" LOL. Some believe it some do not but it makes them feel like the person with the problem.

I am so glad your laser treatment is helping. I hope you continue laser treatment. The level of your PWS is so light compared to mine you have a chance of it completely being removed. If you want to see pictures of mine you can visit my website at www.hankspws.com I have had almost a hundred laser treatments since I started, and now have had some plastic surgery to debulk some of my PWS that has grown over the years.

Thanks again for your post and I hope to hear more about you on this group.

Hank
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  #27  
Old 12-10-2005, 07:46 PM
mikeb23ft
 
Posts: n/a
Default Re: Do you really living with PWS?

I just want to mention that I don't react violently to critisism anymore, that was just how I dealt with it when I was younger (elem/middle school)...I don't go around starting fights every day or anything
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  #28  
Old 12-20-2005, 02:39 PM
Mongolfitz
 
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Default Re: Do you really living with PWS?

I just came across this sight today. I have to say that after thirty-one years (About 25 of which I can remember) it never dawned on me that there were this many people out there with PWSs (I think that's how you do the plural form.) Anyway, one frustration of mine has always been that "no one knows what it's like". I have to say I have found this website, the forum, and the stories contained therein refreshing. (I have been ignoring my wife and child all evening.) If you don't mind, I'll write a little about myself since I have never done so.

I have PWS on the right side of my face and splotches, for lack of a better word, on my nose-- I have to say that these bother me the most. I was an extremely friendly child and I believe that made quite a difference. Of course people said things but when they saw I was happy to discuss it with them they left the subject alone and treated me, as far as I could tell, normally. Grade school and Junior high were tougher emotionally. However, I was taking karate at the time and everyone thought I was a black belt, which I wasn't, and were scared to "mess" with me. (If they had they would have soon found out that I had no idea how to use my karate in real life and they would have made short work of me and my black belt but it never came to that.) In high school I didn't have any problems because I had grown up with most of the students and I happened to be the funniest guy in school. I was class president my senior year and everyone had high hopes for me.

I should add that I started having surgery when I was thirteen or fourteen years old. At first the doctors only did small areas because of the pain involved. (I was pretty tough when I was a kid but I have to say as the years went on my tolerance for pain became less and less and by the time I was twenty or so I was happy to get any drugs I could get before the surgery.) Later they would do the whole area. I would be out of school a week or two while it was healing. The black, grey, blue, etc. was just more than I could take in front of people even though they were my friends. Despite being a guy, I started wearing a light makeup just to tone things down a bit. As time and my skill as a cosmetician progressed I started using more and more makeup to cover it up. This led to some difficulties later, but I am getting ahead of myself.

I had been losing faith in laser surgery for some years. It just wasn't the miracle I had expected and around the time I graduated high school I finally stopped believing that the laser surgery would ever take the birthmark away became extremely depressed and withdrawn and decided to finish myself. It was just a bluff, even whe I was deciding I knew I would never have the guts to do it. Things progressed from bad to worse, and so, to make an already too long of a story as short as possible, I finally found myself in a position where I couldn't go outside without completely covering the thing up with makeup and I couldn't bring myself to work anywhere or show up to university classes because the makup I used started getting greasy and weird looking after a few hours-- although I doubt it ever really looked natural. For someone who started out in life with high dreams I was a miserable wreck living with my parents, without a job, and without a future, as far as I was concerned. I found that the low light of bars and pool halls helped make the makeup look normal and so I started spending a lot of time in places like that. At first we, my friends and I, played pool and drank on the side but that soon switched to drinking and playing pool on the side. I worked a few hours a week with my dad and that got me drunk a couple of nights and I found a way to be drunk just about every other night of the week. I'd sleep until two or so in the afternoon, waking up wishing for the beautiful dawn of night where the "stark reality" (one of the few Depeche Mode songs I liked and claimed as my theme song.) would soften things once more.

Okay, I'm getting tired of writing so I will finish this as quickly as possible. I'm not one for Sunday school answers but the truth is the truth and I believe God gave me the courage to face the world without makup. I had always had a deep belief that God was there somewhere I just didn't think he wanted anything to do with me or mine but when you're at the end of your rope, as they say, you'll try anything and I tried heartfelt prayer to God-- one night in particular. Over a six month period my attitude changed completely. I shocked a few of my friends, stopped drinking, went down to Florida, got a degree in theology, and am now a missionary in Mongolia of all places with a beautiful wife and a great looking, if I do say so myself, ten month old son. I know what I was then and I know what I am now and I give the credit to God.

All right, that was more than I planned to write and more than anyone cared to read. I can't say if the PWS was gone tomorrow I would cry about it. God knows I've hated the thing for many years, but now I have the strength to live with it. Yes, as many people have commented, it has made me a better person. Generally speaking, and cynically speaking, the only people who seem to have anything worthwhile to say are those who have gone through some pain and suffering. I guess it just deepens the soul. Paradoxical in a way, to truly be human you have to get outside of "normal" humanity. Or as someone said, Tears are the price we pay for being able to see. Anyway, I hope that makes sense to someone other than myself.
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  #29  
Old 06-16-2006, 04:06 PM
tateman
 
Posts: n/a
Default I agree

I agree with you. I'm 29, PWS entire left side of face. I think you just have to play the hand your delt and move on. *singing* You gotta know when to hold'em, know when to fold'em, know when to walk away, know when to run,,,




Quote:
Originally Posted by cv123
I was honestly slightly saddened by reading these posts to hear that people are struggling with living with a PWS. I am 26 old year woman with PWS covering most of side of my face. I have had option of surgery and make-up, but I refuse either. I love who I am and I am not ashamed to show my face to the world. Yes, I have had some people give me hard time in my life and I used to come home from some places crying when I was younger. Yes, I do get stares and pointed at in public at times, but I try to never hide my face and I either do not acknowledge them, or just politely smile and move on. I realize that it is human nature to look when something is slightly different. I actually greatly appreciate someone just asking me if it is a birthmark, especially young children. I think that people have been easier on me because they know that I am not embarrassed by who I am. In fact, I NEVER had a student from school give me a hard time at all. It was always just people who I met in passing. I actually received countless complements from others at school for being proud of myself and they thought that my birthmark was beautiful. I think that my different experiences and outlooks comes largely from early experiences. My parents never made a big deal about it and they would always walk away when people were mean, and then tell me that they didn't know better and there was nothing wrong with me. If I came home crying, my mom would let me cry and then make go back out and face the world. They always gave me option of make-up or surgery, but I didn't want it. I am glad that my parents never had my birthmark removed when I was younger (they tried but technology was not successful), because it has formed my personality and gave my the strength in life and confidence that I have today. My heart goes out to others though that do struggle and I wish you the best of luck.
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  #30  
Old 07-06-2006, 09:16 AM
sarah14 sarah14 is offline
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Join Date: Jul 2006
Posts: 8
Default

Hey everyone!

I have PWS on my entire right leg. Luckily it's not that dark, but you can still notice it clearly. I've been picked on my whole life because of it. When i was younger kids wouldn't stand next to me because they were afraid they'd catch it, like a sickness. So from 4th grade up i just wore jeans to cover it up. I'm terribly self-concious about it. I know i shouldn't though because lots of people have worse things to go through than me. But, i just can't help it. The worst part for me is the summer. My friends wanting me to go swiming and i always turn down the offer. Or when they ask why i don't wear skirt or shorts at all. No one knows about my PWS except family and 3 good friends. I'm scared that the birthmark will get sore, numb, or "lumpy" because i guess PWS can do that? It has been a little sore though and i'm terrified!!! I don't know what's going to happen.

Peace & Love,
S.
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