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  #1  
Old 04-05-2003, 06:06 PM
Cuety
 
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Default Im must be the only youth

HI, I must be the only youth on here, im 20 years old and I guess most of you on here are looking for answers for your children.
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  #2  
Old 04-06-2003, 04:04 AM
hankbartenbach hankbartenbach is offline
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Join Date: Oct 2002
Location: Nebraska
Posts: 533
Default Re:Im must be the only youth

Hi Cuety,

My name is Hank. I am 20 years old and I have PWS, and Vasuclar Malformations (hemangiomas).

It is great that you are on this website, because there is only a few of use that are on here that are not parents of looking for help. So what brings you to this website? Do you have any marks?

I am looking forward to talking to you.

Hank B
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  #3  
Old 04-11-2003, 07:10 PM
Cuety
 
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Default Re:Im must be the only youth

Hello Hank,
I don't have hemangioma, I have venous malformation which starts at my toe and goes all the way to my back. I just had some tests results come back from the vascular anomolies center in Boston and everything is good. When I was little I had tests done to see if I had it internally, but I didn't. I just had it done again and still none internal. Also, I had found out great news, that I don't have Arterio Venous Malformation, I have Capillary Venous Malformation. This brings a great relief for me because I only have it in the veins, and the treatment will be much easier to find. So, what I would like to know is do you think it was hard to be a youth and have hemangioma? Did people question you? Did you find it more diffcult to make friends and have gilrfirends? Throughout being a teen, I used to hide it, avoiding pool parties and the beach. I hate when people would stare and question me, I felt like saying IT"S NONE OF YOUR BUSINESS! I was a cheerleader and a dancer, so sometimes I had no choice but to show it. When I first got boyfriends, I would hide it, afaraid that he would think I was "different" and dump me. It took me a long time to understand that it was a part of me and that I had to accept it. If people couldn't accept me for who I was then forget them. I think a lot of it had to do with the name calliing I got in grade school. Now people don't mind that I have a birthmark so big, right now im not worried about what people think, im worried about how to control the pain of it. So how have your hemagioma's changed you?
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  #4  
Old 04-12-2003, 05:56 AM
hankbartenbach hankbartenbach is offline
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Join Date: Oct 2002
Location: Nebraska
Posts: 533
Default Re:Im must be the only youth

HI Cuety,
Yes it was hard growing up with H's. People stared and asked questions all the time. You are lucky your marks are not as noticeable as mine. At least you can hide yours. Mine are on my face and they really stand out. It was not to hard for me to get friends after grade school because the kids got use to me. I was pritty popular in High school because everybody know me. I had alot of girl friends but not in relationships. They where just friends. I have not had very many relationships because women I have meet either are to judgemental or we just become friends. I straight out tell them that if they can not see me for who I really am on the inside then it will not work.
Well I hope I answered your questions.
I will talk to you soon.

Hank B
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  #5  
Old 04-30-2003, 03:16 PM
jhj_79
 
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Default Re:Im must be the only youth

Hey cutie I know how it is I'm 24 and have a substantial vascular malformation and hemangioma in my cheek, tongue and neck. Drs call it different things in different areas, I wish they would make up t here minds (chuckle). Anyway I still get asked questions on a regular basis form strangers and people I meet. My wifes OB got her nurse to ask me about it during one of our prenatal visits b/c she didn't want to offend me which I thought was pretty funny. I would have to say that elementary and middle school were the toughest. by Highschool it had gotten a bit beter but the self esteem was always a word away from being ripped. about my Junior year I had a realization though. it was if people can't accept me and don't like me b/c of this then screw 'em. I don't need them anyway. It may sound harsh but its true you are not only the physical. You are not different than anyone else I played sports still exercise regularly and am in excellent shape for someone my age i must say ;-) Most people say I can talk my way into or out of anything b/c my personality is "contagious" (according to my wife). she's convinced I could make a get a tree stump to carry on a conversation with me if I had to. Like I said I know its tough but there is more out there than those superficial morons will ever know. So keep your chin up,
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  #6  
Old 06-24-2003, 11:14 PM
kristy
 
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Default Re:Im must be the only youth

Hi, You are not the only youth in here. I am 18 and I have 2 hemangiomas and another birthmark that's about 5 inches wide and 7 inches long on my right leg. no one knows exactly what it is, but it is awful. At the age of 12 I had one hemangioma removed from my left shoulder because it became life threatening. It is so hard dealing with them. I hate swimming or even wearing shorts or tank tops. I am still not even over my self-conciousness yet. I am considering having the one on my leg removed.
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  #7  
Old 07-01-2003, 10:14 PM
gaminexx
 
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Default Re:Im must be the only youth

Hello all,

Oh no you are definitely not the only one here.
My name is Jan, I'm 20 years old and I also have AVM. It's located on the lower left side of my face, starting from the earlobes to the chin. When I was younger people would ask me why my face was red on that side, I would aptly reply that it was a "tuna", lol, mispronouncing tumor, when both the answers were wrong. It was a hemangioma. At the age of 9, I started bleeding from the inside of my mouth in that area of the face. However, it didnt become life-threatening until I was 11, when I had to have my entire jaw removed and replaced with first a metal plate, and then a bone donor's. But yeah growing up as in adolescent in Miami wasn't all that easy for me. It was kinda strange being a minority of a minority, I'm also Taiwanese by birth. I was extremely self-conscious, and still am to this day... however I have to profess that I am getting better and am much more accepting of my condition. I'm so glad this site and forum exists. I'm planning on having an embolization surgery in August, and that will be the first in 4 years. Anyways, I hope everyone is well, and if you have any questions of any sort or just want to talk, I'm here to lend an ear. Take-care everyone.
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  #8  
Old 12-11-2003, 05:41 PM
eprmo eprmo is offline
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Join Date: Dec 2003
Posts: 133
Default Re:Im must be the only youth

To the teens,

,my daughter who is 14, won't even discuss her "birthmark" anymore. It's smack in the middle of her face. It starts at the bridge of her nose, and ends at the tip. She has had two laser treatments, which have lightened the redness but that's about it. Her nose is swollen, and the skin has atrophied. I have offerred her this web-site and she refuses to even hear about it. Her attitude is "if you think I'm ugly, that's your problem". She knows I believe she is beautiful, as well as her close freinds,,but, she is angry that I am tying to find ways of having it removed. She says,,"it's a part of her now, ".

I feel torn, because I am searching ways to have it removed, she may think, I think "she is ugly".. I don't, of-course, I only want her to feel this is something she doesn't have to live with. She wears make-up to cover the redness, but the mishapen nose cannot be hidden.

Having the birthmark has made her stronger emotionally, and with the love and support of our family and friends, she knows it's not who she is,,it's only how the outside world sees her. She is an honors student in high school, and socially is fine.


Should I continue pursuing help???? PS..

She is scheduled for another laser treatment in two weeks, and then a consultation with Dr. Waner in Feb...(she goes, under duress)
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Elissa Rifkin
VBF Developmental Specialist
psyelectro@aol.com
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  #9  
Old 12-11-2003, 05:41 PM
eprmo eprmo is offline
Senior Member
 
Join Date: Dec 2003
Posts: 133
Default Re:Im must be the only youth

To the teens,

,my daughter who is 14, won't even discuss her "birthmark" anymore. It's smack in the middle of her face. It starts at the bridge of her nose, and ends at the tip. She has had two laser treatments, which have lightened the redness but that's about it. Her nose is swollen, and the skin has atrophied. I have offerred her this web-site and she refuses to even hear about it. Her attitude is "if you think I'm ugly, that's your problem". She knows I believe she is beautiful, as well as her close freinds,,but, she is angry that I am tying to find ways of having it removed. She says,,"it's a part of her now, ".

I feel torn, because I am searching ways to have it removed, she may think, I think "she is ugly".. I don't, of-course, I only want her to feel this is something she doesn't have to live with. She wears make-up to cover the redness, but the mishapen nose cannot be hidden.

Having the birthmark has made her stronger emotionally, and with the love and support of our family and friends, she knows it's not who she is,,it's only how the outside world sees her. She is an honors student in high school, and socially is fine.


Should I continue pursuing help???? PS..

She is scheduled for another laser treatment in two weeks, and then a consultation with Dr. Waner in Feb...(she goes, under duress)
__________________
Elissa Rifkin
VBF Developmental Specialist
psyelectro@aol.com
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  #10  
Old 12-13-2003, 04:23 AM
hankbartenbach hankbartenbach is offline
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Join Date: Oct 2002
Location: Nebraska
Posts: 533
Default Re:Im must be the only youth

Hi elissa, This is hank again.

After 14 years of laser treatment I got tired of going to the doctors. I finely convinced my parents that I did not want treatment any more. I told them I do not care what people think of what I look like, it is the person inside that counts. My marks are on more then half my head including my face. Even though I am a guy I do have cosmitic makeup but only wear it when I know I am going to be around alot of strangers.

If you want my opinion, I would leave the choice up to your daughter she is at that age of her life where she will know if she wants her marks or not.

If you have any questions please ask.

Hank
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