Life with an unmanagable PWS - Vascular Birthmarks Foundation Forum
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  #1  
Old 05-01-2012, 04:22 AM
kaelinja kaelinja is offline
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Default Life with an unmanagable PWS

Hello everyone, (please read to the end before coming to a conclusion)
I am new to this site today and I wanted to introduce myself. I am a 26M with an extensive PWS on my right arm, chest, and back. It has been the bain of my existence for a long time, but it has motivated me in the right direction regardless of how it makes me look. I has always been tough over the years because of how it has affected my life, as I am sure that you as the reader that you are can empithize with. I can't go anywhere or do anything without it being the focus of attention for strangers, and for a long time it had a detrimental effect on my love life and life in general.
For those of you who are younger, and are seeking help, I for one can tell you that there is nothing anyone can tell you that will help. No amount of advice that your parents, doctors, or friends can take away the feelings you will get everytime a person stares or points at you. This is the bad news.
The good news is, you will learn to harness those feelings. You will learn to take all the rejections from the opposite sex and harness your feelings into something good. You will learn to deal with stuff that none of your friends and family can even remotely understand. And you will be the better person than all of them.
The reason I can say all this is because I have done it. I have lived the life, and I can say I am better because of it. When I was younger, support groups like this did not exist. A coalition of doctors that can exist because of the internet was not aroudn. You are lucky, trust me, in so many ways that this resource is here for you. Learn as much as you can, it will help you succeed in life.
To bring this little soap box story back around, I will sum up how I have been able to harness my difference into success, so maybe it can give you an example. I hit the books as a kid, but I balanced it with athletics and social opportunities. I did not hide away because I was made fun of, I made fun of myself in a good way so that it was no longer ackward. If you don't let the cruelness of children bother you, and join them in joking on yourself it will show them you don't care what they say. Do this and BE CONFIDENT with yourself. As a teenager I let my PWS get to me, and I allowed others to bully me, let me say that again, I ALLOWED others to bully me. It was my own doing because I was not confident with myself. I was always a good athlete, so by having solice in sports I was able to get through middle school (which is hell for everyone, even the popular kids). I progessed in academics and athletics in highschool, and even though I was not popular because I was different, I was still known by everyone. I made friends in every social circle and diversivied myself as a person. I was not exactly a big hit with the girls in my highschool, but those that gave me a chance, I made the best of it and learned how to be a better person. It is just as hard for your significant other as it is for you, you have grown up with your PWS, they are still getting used to others staring at you. Allow them a growing period to get used to it, and if they can't, do not be mad at them. I was able to learn from my high school social engagements, sports, and studies. After high school I went on to play college football, again it was my outlet. With all the social skills I learned in high school I was able to be friends with a wide group of people in college. After college, I went on to graduate school while I worked as a bartender (again, good social skills). Now a few years later, I am in the Air Force flying C130s for a living, married to an extremely gorgeous woman (who is pregnant with our first child), and I know that all that crap that I went through over the years was completely worth it.
The summary of all this is don't let others hold you back, don't let them demoralize or bully you, and use your difference as a catalyst to achieve greatness. Through dedication and will power, I have a graduate and undergraduate degree, a beautiful wife and family, and a job that is better than any of those who made fun of me as a kid. If you allow others to hold you back, then it will be your fault when you are unsuccessful, but if you learn to adapt and overcome your difference and use it as a benefit and not a boulder around your ankle, then you will succeed.
Please feel free to reply to this post if you need help at any time. I have lived around the world. I have seen and dealt with a lot, so hopefully I can help you. I have attached a few pictures from over the year so they can give you an idea of how large my PWS is and how happy you can be with it. Hopefully this post will help you, stay positive, and good things will happen.

Joe
Attached Images
File Type: jpg Dun River Falls.JPG (24.2 KB, 0 views)
File Type: jpg Flight Line with Abby (9).JPG (56.5 KB, 0 views)
File Type: jpg Joe Abby Good.jpg (43.9 KB, 0 views)
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Old 05-01-2012, 03:21 PM
KatieG KatieG is offline
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Thanks for sharing your story!
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Old 05-05-2012, 09:08 AM
Myliitlepuddin Myliitlepuddin is offline
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Inspiring story for any adult or child suffering with a Birthmark. As a parent I agonise over making the right decisions for my daughter who has microcystic lymphangioma. I can not decide on whether to go ahead with treatments for her or whether i should leave it and allow her to make her own decision when she is old enough. As a mother i want to protect her and i feel like my heart is being ripped out when anyone says anything about her lip. Im really struggleing with deciding this. If treatment was available to you as a child would you have wanted your parents to go ahead with this for you or would you have wanted to make this decision yourself. My daughter is 3 years old, she is just starting to realise her lip is a bit different now. She really is a beautiful little girl.
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Old 07-31-2012, 05:32 AM
kaelinja kaelinja is offline
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Quote:
Originally Posted by Myliitlepuddin View Post
Inspiring story for any adult or child suffering with a Birthmark. As a parent I agonise over making the right decisions for my daughter who has microcystic lymphangioma. I can not decide on whether to go ahead with treatments for her or whether i should leave it and allow her to make her own decision when she is old enough. As a mother i want to protect her and i feel like my heart is being ripped out when anyone says anything about her lip. Im really struggleing with deciding this. If treatment was available to you as a child would you have wanted your parents to go ahead with this for you or would you have wanted to make this decision yourself. My daughter is 3 years old, she is just starting to realise her lip is a bit different now. She really is a beautiful little girl.
I would go ahead and get the treatment while she is young. If she can avoid being stared at, or you can mitigate any of the problems that happen as you age with it, I would go ahead and treat it.

Joe
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Old 05-06-2012, 12:49 AM
kaykay kaykay is offline
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thanks for sharing your story Joe. It might be hard for parents to hear sometimes but yes, it is still up to use to work out our PWS issues on our own.



To myliitlepuddin, my view is if it is a health issue by all means yes get treatment. my mother wasn't able to afford treatement for my PWS. No fault of hers but i wish it hadn't been so. health issues grew as i got older. I know you really feel for your daughter when people comments, how it affects her, but just help her to be strong and support her when she needs it. It would be nice that no one ever comments but thats not reality.
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Old 07-25-2012, 05:56 AM
hflores018 hflores018 is offline
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Joe,

Thanks for sharing your story and for serving our country! I'm a 42 y.o. female and believe it or not, there's a bigger birthmark out there than yours. I have a PWS from my finger tips all the way up my arm, to a quarter of my chest, neck and 1/4 portion of my back. It's not raised, but it is a bright red. I grew up in a small town and graduated w/most of the same kids I started school with, so I really didn't have issues in highschool b/c well, they were used to me after 12 years, right? The self-consciousness developed after high school when I hit the real world and I was no longer in my perfect little guarded world and that's when I noticed the stares. Well, the stares didn't hold me back from dating b/c I was still being asked out, it was my own fears that kept me from getting into relationships that eventually I'd have to show my mark and how would that person handle it? So my solution was not to allow anyone to get too close for fear that once they saw it, they would run in the opposite direction. I'm happy to say that I've been with my husband for the last seven years. We have a 4 year old son that is perfectly healthy. He has a nickel size birthmark, tan color on his hand and a small one on his little butt that looks like a bruise, other than that, he's perfectly fine. Question for you....have you had any treatment? I have not. Also, does your PWS change colors when you are cold and do you ever feel pain or numbing? Thanks for taking time to read my posting. Thanks for all that you do for our country. Good luck and Blessings to your and your family.
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Old 07-31-2012, 05:36 AM
kaelinja kaelinja is offline
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Quote:
Originally Posted by hflores018 View Post
Joe,

Thanks for sharing your story and for serving our country! I'm a 42 y.o. female and believe it or not, there's a bigger birthmark out there than yours. I have a PWS from my finger tips all the way up my arm, to a quarter of my chest, neck and 1/4 portion of my back. It's not raised, but it is a bright red. I grew up in a small town and graduated w/most of the same kids I started school with, so I really didn't have issues in highschool b/c well, they were used to me after 12 years, right? The self-consciousness developed after high school when I hit the real world and I was no longer in my perfect little guarded world and that's when I noticed the stares. Well, the stares didn't hold me back from dating b/c I was still being asked out, it was my own fears that kept me from getting into relationships that eventually I'd have to show my mark and how would that person handle it? So my solution was not to allow anyone to get too close for fear that once they saw it, they would run in the opposite direction. I'm happy to say that I've been with my husband for the last seven years. We have a 4 year old son that is perfectly healthy. He has a nickel size birthmark, tan color on his hand and a small one on his little butt that looks like a bruise, other than that, he's perfectly fine. Question for you....have you had any treatment? I have not. Also, does your PWS change colors when you are cold and do you ever feel pain or numbing? Thanks for taking time to read my posting. Thanks for all that you do for our country. Good luck and Blessings to your and your family.
I have had all lasers tested on me from 1996-2000. I can't remember all of them, but it was about 4-5 different types. I haven't tried anything since 2000 b/c it was incredibly painful and really didn't do anything other than scare perfectly (yet purple) normal skin. I wouldn't recommend waiting until later in life to try and treat b/c it has proven to not be as effective. As far as getting stared at, I moved around 9 times as a kid (my father was military too) so I grew up having to explain it multiple times to different people every single day. However, that is something that you learn to get used to. Those that are ignorant or mean about it will get what is coming to them. I had PLENTY of girls that would not date me simply b/c I was different, however, I now have a gorgeous wife (far more beautiful that any girl that had ever shot me down), so it all equals out in the end. I am proud of who I am, and I can honestly say that I am who I am b/c of my birthmark. Stay strong and embrace who you are.
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