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Old 01-10-2009, 09:09 PM
sweet pea sweet pea is offline
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Join Date: Jul 2006
Location: Southern California
Posts: 111

I have always felt self-conscious about my lymphatic malformation and after my last surgery, I have felt more 'deformed' than ever. Though I think I've finally gotten to the point where I just don't care any more. I told my boy friend about it all and he was really supportive and didn't mind it at all. The relationship, didn't work out, but it had nothing to do with my LM. I just figure, if they can't handle knowing about my LM, then they aren't worth my time.
what makes you different, makes you beautiful
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Old 04-23-2009, 04:58 PM
kaykay kaykay is offline
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Join Date: May 2006
Posts: 233

almost a year now i've been single. Had a great guy in my life. still getting over the break up. Its been hard when someone makes you feel so alive. We didn't break up because of my birthmark. some esteem issues i finally gave in to partly but not to blame, .

Treatment seems out of reach for me. I kinda accept my face is just going to get worse. I don't think i want kids, family. I'd like to have a few guys in my life and just enjoy life alittle without worrying of having kids. I don't expect men to get attached to me. I am ok with just sex. Hanging out. Have some drinks.

I don't think i can really trust a guy with my heart again. Feels like too much to lose.
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Old 05-05-2009, 10:34 PM
bigsmile bigsmile is offline
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Join Date: May 2009
Posts: 1
Smile I did it!!!

Hello to all:
i'm also new here , i also have a PWS and its goes from the corner of my left eye up to my head so most of it is cover by my long black hair ,i grew up very shy, and lonely but one day i realize how alone i felt ,so i started my way to break the shell i always living in , and open my heart to so many wonderful people, i started being friendly , letting other people know me as the person i really am, it wasnt easy but i pushed my self forward,im not the kind of person who need to make a joke to fit in a group but im quite funny,i'm smart and kind to others, i care about so many things that my little "problem" is really that.
The days as a teen are gone as my shy personality , i'm happly married ,and can't imagine how much my life has changed ,and how wonderful life has become to me and my family
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Old 05-11-2009, 08:11 PM
LuckyOne.40 LuckyOne.40 is offline
Junior Member
Join Date: May 2009
Posts: 3
Default Happily Married

Thanks for asking a question that I too wondered about. Unfortunately, I was born with a Capillary Cavernous Hemangioma that disfigured one side of my face from brow to chin. However, I had a few good men in my life that were able look beyond the deformity and love me unconditionally. In a few weeks, I will celebrate my five year anniversary with a wonderful man who has told me every day for the past nine years that I'm beautiful. In my heart, I know God sent him to me and there is not a day that goes by that I don't think about how lucky I am.
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Old 07-09-2009, 03:38 AM
Lindsay C Lindsay C is offline
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Join Date: Jul 2009
Location: Kansas City, MO
Posts: 3

I am so new to this that im commenting on all old threads, lol not sure if anyone will see this. well Hank, I am 28 I have a port wine stain on my leg that covers about 93% of it, covering my foot and going all the way up to the top of my thigh. I have had a lot of serious boyfriends actually, and they never seem to mind. i have dated a LOT of men and trust me only a handful actually know about it. With yours being on your face girls see it right off the bat and actually you would be surprised at how many girls would look right past it and not even notice it. I liked a guy that had a birthmark on his face in highschool, and i thought he liked me but when i told him about mine i felt like he wasn't into me anymore, maybe because he had one and he thought it would be "too" much if we both had one.. im not sure. Anyway i really didn't even notice the one on his face, I thought he was cute and funny and he had sparkly eyes. Yeah yeah it still hurts that he stopped talking to me lol. im good. trust me you are gonna find someone great. email me.

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Old 07-14-2009, 12:40 AM
SukottoKenmei SukottoKenmei is offline
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Join Date: Apr 2005
Posts: 3

I'm 23.

I was in a 5 year relationship until I let my stress with the pressures and challenges from my disease get to me so much that my g/f left me. There were other issues too but if i think about it, most of the problems were either directly or indirectly related to the disease. I've went through alot of surgery and 2 huge surgerys where i flew up to NYC to see dr. Waner and things are alot better now but still not fix as much as it could be if i could afford more surgery. While i was gone my ex and one of my friends apparently hooked up and then lied to everyone about it while i was in NYC for a few months. When I came back I had to deal with 100's of rumors about me and people thinking the wrong thing about me.

Now i'm having trouble seriously opening up on any type of level towards other people. I kind of feel like I allowed some one to see my disease in its entirerty after being stabbed in the back by so many people. It really makes me want to finish up the surgery to fix my body, finish my degree, and leave this place i'm in and never return.
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Old 08-20-2009, 04:58 PM
RowdyBliss RowdyBliss is offline
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Join Date: Jun 2009
Location: Delaware
Posts: 29

What a great thread!

I'm 33. My PWS is on my right leg, starts at my toes, covers the bottom of my right foot, covers the back of my calf and thigh, goes over right butt cheek and stops on my lower back.

Dating and relationships were never an issue for me - and it's not like I ever make any effort to cover the birthmark with long pants, makeup, etc. In fact, I look at my birthmark as a "jerk filter;" I'm a pretty terrific person, and if someone's not going to go out with me because I have a big ugly birthmark on my leg - HIS LOSS! He's obviously way too shallow and obsessed with appearances to be my cup of tea..!

I've now been through two marriages (first divorce was because he did something truly terrible, second divorce was because he turned out to be gay!), but neither husband nor any of my more serious boyfriends had any issue with my birthmark, ever. In fact, as I was laying in bed with my college boyfriend and we were talking about it (because, yeah, we'd just "done it" and I was naked as a jaybird), he told me it was as if the day I was born, G-d had just gotten a brand-new purple Magic Marker and was eager to color with it. I thought that was really sweet and cute!

I do a lot of theatre, and I'm a dancer, so my legs are exposed a lot - but for some rehearsals, I wear dance tights that do an excellent job of concealing them - although I wear the tights mostly to conceal the cellulite, NOT the PWS, ha! My boyfriend is in the show with me, and he told me later that it was weird to see me without the birthmark - that he felt like something was missing. He said that my birthmark is part of the "whole me" - and he happens to love the "whole me."

I am an extremely extroverted person - perhaps with an overabundance of confidence, sometimes to my detriment! I put myself out there and live my life as if nothing is wrong - because nothing is wrong. I have a PWS. It's a part of me. It's not wrong, or bad. It's just there. Is it ugly? Depends on the person looking at it. I happen to believe that ALL life is beautiful, no matter how it's colored, marked, shaped, sculpted or created - and that includes myself. I try to find others like me to spend my time with - but I'm not going to find them by hiding myself. So I get out there... and by being confident, I think I've been able to meet and have meaningful relationships with good guys, some lasting for years.

I know it is so hard to get past it - hey, I even have some days where I hate the thing, especially when I audition for a part and I know I didn't get it because I have this lousy purple thing. BUT - I just don't give myself permission to feel inferior... because I'm NOT. And neither are any of YOU.
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Old 09-02-2009, 07:12 PM
kkent kkent is offline
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Join Date: Aug 2009
Location: St Johns, Oregon
Posts: 23
Default PWS my issue.. most people don't see me without makeup.

I am almost 30 (this December). I have 2 children of my own, 4yr old son and 8 yr old daughter. My son was born with a hemogioma on his back but is not raised anymore and is almost faded =]. I was born with a PWS on my right side of my face between the size of a quarter and silver dollar.

I had problems getting taunted as a child, but learned to wear makeup as a teenager which gave me more confidence. I have worn makeup every day since. My ex husband of almost 10 years i met when I was 14 in high school. We started dating when I was 17 married at 18 and divorced 3 1/2 years ago but he is still one of my very best friends. He didn't know of my PWS for about a year into the relationship. He loved me for who I was and we divorced because we were not inlove in the way a married couple is.. long story to get into.

I have been with my current boyfriend for 3 years this December. He also didn't know of my PWS for the first year and when I showed him.. he was dumb founded that he knew me so well but never knew about it. He is actually the only person to actually kiss it too.. and loves me with it. We joke and he calls it "the mark of the beast" (long joke).

I just now started researching about my PWS about 2 months ago. My mom always told me it was a skin discoloration, and recently has passed on. and since none of my doctors knew about it, I never had it checked out. I started noticing a lot of changes in it recently. Texture.. and there is now a deep purple spot in it.. and it is changing more and more.

My boyfriend came with me to my first consultation and basically I wanted to knwo how to handle this. If insurance coul dhelp.. what it would take, treatment and cost wise.

My boyfriend offered to pay for the treatment and I go to my first treatment in 2 days.

I am excited and anxious..

I will love the day I can freely go outside without makeup and feel completely free! I have been too self consious about it my whole life.

I wish my mom was here to be here while I go through this process. I lost her too fast.

But I enjoy reading about other peoples experiences as so many of you share so much of my same issues.
Beauty is in the eye of the Beholder
K. - PWS on right side of my face
mother to son who has hemangioma on his back
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Old 09-17-2009, 01:41 PM
GargantuanCranium GargantuanCranium is offline
Junior Member
Join Date: Sep 2009
Posts: 1

Hello there.

I am 29 (30 next month - arrrgggh!!) and have been happily married to my gorgeous wife for 6 years. I have fairly impressive Port Wine Stain which covers most of the left side of my face and also suffer from Glaucoma associated with the PWS.

When I was younger I, like most people with or without birthmarks, had my hang ups about certain things. I didn't really have a proper girlfriend as such until I was 18. Girls would be interested sometimes as I am fairly loud and outgoing and enjoy a good carry on but I had such a lack of confidence. I'd look in the mirror and think "How could any girl want to get with that?!". I once left a school disco because a girl was getting a little close for comfort!!

Still, that's absolute garbage. The fact is I was holding myself back with my attitude and, as I got older, I came to realise that most girls really aren't that shallow and, so long as you are not an idiot or a dullard, have a decent attitude and can make 'em laugh then you are always in with a shot!!

So, my advice is go out and have a pop at anything that moves, the worst that can happen is a "no" and a few moments of blushing as you reflect on your rejection, just like anyone else.

Seriously though. Don't worry about it. It'll happen when it happens.
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Old 09-18-2009, 07:09 PM
Cuety83 Cuety83 is offline
Junior Member
Join Date: Jan 2008
Location: Rhode Island
Posts: 11

Originally Posted by hanisah View Post
Hi all
I am new here. I been searching for a local birthmark support group in Singapore but there aren’t any available. I am so glad this discussion board knows no boundary
I have a purplish, flat birthmark on my right cheek. I have not seen a specialist to diagnose my birthmark. Maybe back then my birthmark have never really bothered me.
Up till recently… when I start using concealer to cover my birthmark, I start getting calls and dates invites from guys... and it makes me wonder why do I suddenly get the attention after I used concealers and not before. I never dare to get into any relationship because I am so scared of being rejected once I reveal my birthmark. Sometime I wish I can just erase my birthmark.
Welcome to our group! Im glad that you found this site!! Don't worry!! If a guy won't date your or would stop dating you over a birthmark on your cheek than he's not worth it!! I have a port wine stain covering my entire right leg, and even though it worried me to date, SURPRISE!!! I can't believe that none of the guys thought it was a problem!!! Beauty is on the inside, and if your confident to say, "Yeah I have a birthmark!" They won't make a big deal out of it! And I have never been dumped because of it!! Good luck in the dating scene!!!
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