My HUGE birthmark; HELP. - Vascular Birthmarks Foundation Forum
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Go Back   Vascular Birthmarks Foundation Forum > Individuals Living with Birthmarks > Living with a birthmark - my story

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  #1  
Old 06-05-2007, 01:45 AM
sophia06
 
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Default My HUGE birthmark; HELP.

Hi, this is my first thread on here and I have to say I am very happy that I am not the only one. I mean I probably have the biggest birthmark out of anyone I heard or seen or even read of (Yet at least) My birthmark starts from my lower back connecting down to my left buttox and still going all the way down the outer left side of my leg and ends wrapped around my foot. It is HUGE. All my life people thought so weird of me and it makes me really bad about myself. There are 3 MAJOR things people always say to me; people think i was abused, was burnt, or even it was also called a contagious disease. I am just so embarrassed about it. I can't wear shorts or anything short. I am 19 and at times think that I can get over it and deal with it but I hate people looking at my leg and assuming ALL THE TIME those 3 things. I personally don't know what to do and don't know where to start. I mean I read stuff on many websites that my port wine stain can't be totally treated and that makes me feel worse about myself knowing that I am still gonna have it for a long time. Advice and help would be nice folks. And thanks so much for reading.

- Sophia
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  #2  
Old 06-05-2007, 10:49 PM
hankbartenbach hankbartenbach is offline
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Join Date: Oct 2002
Location: Nebraska
Posts: 533
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Hi Sophia,

First of all welcome to the group.

As you have proabably seen some of my posts I am Hank. 25 year old with facial PWS/SWS.

I do have some good news. You do not have the largest PWS. There are three people right off the top of my head that I know that have 60, 75, and over 90% of their body covered head to toe with a PWS. The one that is over 90% is a toddler, but the other two are both adults. I could get you there email address if you would like. Just email me and I can forward you their email address. Also, you can check out my website www.hankspws.com I have links to individuals websites on there as well.


All three of those people have SWS (Sturge Weber Syndrome) You might want to consider looking into the condition. If you have it or KT Syndrome which effects a persons limbs where PWS is. KT is also related to SWS.
There is a lot of information out there with KT and SWS. There is some on this website as well.

Now about the comments. Being that I have my PWS on my face you can imagine the comments I get. Now picture this I work in retail. You would not believe the comments I get.
The best thing I can say is teach yourself to become more self confident. If people can tell that your birthmark bothers you then they will point out your flaws. I ust let the comments go in one ear and out the other, that and I have a hearing problem plus selective hearing. You have to train yourself to not let people bother you. If you want to wear shorts, then wear shorts and show yourself off. Ignore the rude people that are not educated enough to know what a birthmark is. I always have turned to eduaction for children because they do not know better but adults are just rude some timres. It takes time to get where I am. I have been trying to get my fiancee (who is the same age as you) to not get as upset when people make comments about my birthmark or her blindness.


Well I hope this has helped a little and if you ever would like to talk you can email me or message me here.

Talk to you soon.

Hank
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  #3  
Old 06-06-2007, 05:44 PM
nickbar nickbar is offline
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Location: Pacific Northwest
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Welcome to the group. The problem is not you...it is the people that have acted ignorant towards you. I am sorry you've had to deal with this. Don't let your b-mark stop you from doing everything and anything you want!!!! Hanna Storm...successful journalist/reporter with (cbs I believe) has pws on her face. SHe faced a lot of teasing as a child, but hasn't let that stop her from being who she is and what she wants to be. Tina Turner...large pws on her arm....do I need to say what she has accomplished? Casey Martin, pro golfer... has KT in his leg. If you could get to a place (and I know it isn't easy) where you saw the rude people as the ones with the problem, not yourself.... it would change your life! You deserve it!

HUGS!

Corinne
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  #4  
Old 07-26-2007, 10:51 AM
PiaJoy PiaJoy is offline
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i have a birthmark on my left leg too.. and i never wear shorts out. it really hurts me that i can't. don't you feel the same way? i really just want to go out. go to the beach. wear a swimsuit.. and i can't do all those things..i completely understand you. i am 17. and i'm new to this group.. i'm just so happy that i'm not the only one struggling with my birthmark..
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  #5  
Old 09-25-2007, 05:39 AM
Nicolefila Nicolefila is offline
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Join Date: Sep 2007
Location: I am from Tucson Arizona
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hey Sophia,
until I read your story, I thought my hemangioma was big. it goes from my lower left leg, into my hip, and up into my stomach. It is most noticeable on the back of my left leg though. It's also embarassing for me to try and wear shorts I am sure people would think I am being abused or something. When I was little and had just a little birth mark, the daycare centers that my mom took me to thought that she was hitting me or something. I wouldn't even dare trying to go to a public pool in a swimsuit. Not only do I have a huge bruised area, I also have numerous scars and places where I had treatments that grew into blisters on my backside. They look like antholes now that they have healed. So what kind of birthmark do you have? Does it have a specific name. Like mine is a venous malformation or hemangioma. Well I agree with everybody. It's nice to know that we are not alone and at least if nothing else, this website is helping me to open up and talk about things that I have tried to hide my entire life.
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  #6  
Old 09-26-2007, 08:17 PM
Lisa_99 Lisa_99 is offline
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Join Date: Mar 2004
Location: Madison MS
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Hi Sophia !!!

Welcome to the list ! We are glad you are here. There are some wonderful folks here to offer feedback and support ! You are not alone.

My daughter is the birthmark member of our crazy family. She is 18 , and has lived life to the fullest thus far!! We have attempted to help her develop into a strong, independent young lady- So far, so good ! ( except that right now the stage is I am 18 and MOM is stupid.... but that will pass -- )

Addie also has a vascular syndrome called KT ( meaning vascular malformities -- in this case in her left leg, and foot. ) She's been a gymnast, softball player, and all star cheerleader! She is supposed to wear a thigh hi compression stocking ---and has done so very well up until this past year. She has had her share of pain, needing her foot rubbed, having to elevate her left leg and asking to call mom from school -- just because it hurts.

She is paying the price now - as her foot and ankle are beginning to show true lymphedema - A smart doctor has told her several times what the possibilities are if she DOES NOT wear the garment. She knows what she has to do -- we've taught her and brought her the knowledge -its' up to her to maintain and take care of her body.

To share how's she's handled those questions as you get ---
well, she's been known to say IT"S a birthmark !!! NOO It does not hurt -- the veins underneath hurt sometimes. Or -hey I have a pair of stockings - I only need one -- You can wear the other one !! -- or just ignore folks.. That seems to work best-- as difficult as it is for her at times.

Keep in mind , when others ask or look at you -- they do it out of the not knowing - this is totally normal nature -- they will most likely react based on your reaction to their stares , etc. Take it all in stride-- they don't know--- they stare, unless there is conversation for you to explain they still don't know any more than they did when they stared. It's all a crazy cycle!!!

Over the years, Addie has gone through times when she wants to the birthmark gone, then at other times, she will say " hey it's part of me and who I am - it's ok .." YES it has gone from one extreme to the other -- believe me !

I so hope for you that you can get through these times and use the negative feelings to turn into something positive!

We are all here for your support and will continue to be!
Write if I can help or you just need to chat!!!


Lisa
email: lisa.williams99@gmail.com
Addies's mom
Mississippi

Ps: if you have not already -- and there is any pain involved you may try to find someone to do the MLD massage technique for you. MLD stands for Manual Lymph drainage massage.


~~~~~~~~~~~~~~~~
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  #7  
Old 09-27-2007, 05:11 AM
sweet pea sweet pea is offline
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Join Date: Jul 2006
Location: Southern California
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Hello and welcome to the group. im sorry to hear about the way people treat you. i get some of those comments too. i have lymphangioma(LM) and its not fully treatable. i will have it all of my life. i wouldnt let other people's comments stop you from doing anything. i love going to the beach and go all the time. i get weird looks and see people making comments, but it doesnt bother me too much. or at least i try really hard to not let it affect me. going in for laser treatment might help and it may not have a significant result, but can help. its worth a try. well good luck. hugs.
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  #8  
Old 04-27-2008, 08:51 AM
Min Min is offline
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hey Sophia,
i have a birthmark that's fairly big on my back. i love it the way it is. i think it's a matter of perspective. i know someone who has pws on her arms, left side of body, and legs, but i hardly ever notice it. she's so confident and happy.
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  #9  
Old 05-24-2008, 06:02 PM
ocongr ocongr is offline
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Join Date: May 2008
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Default hey.. i hope i can help!! :D

i am really new to this site, because i decided to research into my birthmark and found this neat community of people who i can relate to and who i hope can relate to me.

i understnad how u feel... i'm 18 and have a Giant Hairy Nevus on my back (from the top of my neck to my bottom, spread right around my back)... for many years i have been extremely conscious of it. However i was very blessed in that my parents had plastic surgery done to it to try to remove it as the risk of cancer was very high if it was left alone. But even with the scaring it looks awful.
I guess we can relate in that, people seem to never let you forget the fact that you have a birth mark, and in some peoples words 'what attacked you?' or 'ohh she's half pony'.
For years i had to do swimming lessons and other sporting activites with people sniggering and laughing, which as a kid knocks ur confidence. I still havent been able to tell my friends about it and hide it as best as i can.

the best advice i'd like to give u; is to build a wall against the rude comments (block them out... prtend they were never said ) and in a way think of it like this (as silly as it sounds)... we are all unique and perhaps people are jealous of it... although what we have is not common to there eyes it's unique. You have to embrace ur uniqueness..... because without it u wouldn't be u. It's what makes you beautiful in gods eyes...so please don't let rude comments knock you.
Also if people do try to joke about your birthmark... joke back.... i've learned that u can't take all comments to heart.. i try to laugh them off and occasionly make a joke about it myself... as my birthmark isn't going anywhere!! lol

i hope this helps ... but just remember we are all alike ... and know what your going through ... don't let it get 2 you and embrace ur indivdual beauty!!!!!
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  #10  
Old 07-09-2009, 03:03 AM
Lindsay C Lindsay C is offline
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Join Date: Jul 2009
Location: Kansas City, MO
Posts: 3
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I am not sure if anyone will read this because of the date, but I too know what you go through with not wearing shorts, or swimming with people, even wearing sandals is hard sometimes. (I have such low self esteem as it is from this and other problems) im 28 and my port wine stain is all over my foot and goes up in a weird pattern almost completely wrapping around, and goes up to the very top of my thigh. I was in sports in high school but senior year it was just too bothersome, so i didn't do any sports all because of a stupid birthmark, but people don't ever seem to know what it is and stare. one thing I would love to do is actually go to the beach without it having to be dark and changing RIGHT before I get in... that is usually what i do when going in my friend's pool. to add to the shame, im a rather large girl and some of that is due to not wanting to go out and workout and play sports because then i would have to wear shorts... a vicious cycle i would love to end. i would love it if anyone that shares in huge birthmarks would like to email me. im in kansas city mo, if you're in the area maybe we can meet up and chat. Im pretty open. my email address is lindscorn@yahoo.com

Last edited by Lindsay C : 07-09-2009 at 03:22 AM.
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