My story of living with a Giant Hairy Nevus on my back!! - 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 05-24-2008, 05:19 PM
ocongr ocongr is offline
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Default My story of living with a Giant Hairy Nevus on my back!!

well i'm new to this as i decided it was time to do some research into my birthmark on my back. I was so pleased to find this site as i can now tlk to people who i can relate to.

right so my story begins with me being born with a Giant Hairy Nevus which is basically a huge hairy (thick horse like hair in my case) birthmark.
It was located on my back and began at the top of my spine and stopped at the begining of my bottom.

As a toddler my parents decided to have plastic surgery done to try to get rid of some of the hair and then graft some new skin onto my back. However the skin beneath the hair was heavily brown and so i have brown and white parts on my back which adds a bit of uniqueness to my birthmark i guess .......lol.
Overall i have jad 12 operations on my back and decided when i was 14 i didn't want any more operations because i liked my birthmark as it was.

Growing up was tough which i have read in some of the threads everyone has had to deal with. I hope you are all like me and have learned to grow a very thick skin to these nasty remarks.
I also have an identcal twin who is so pretty it's ridiculous. Sadly i was born with the birth mark and she wasen't, again growing up was tough in the sense that my best friend and twin sis couldn't realte to my situation.

Through the 18 years of having my birthmark i would never have it removed, as i have learned to love it. Although it is annoying always having to wear high necked tops to keep the sun off of my back but u learn to accept it. I love being unique and wouldn't change it for the world.

If u have anything similar to this please get in contact with me as i would really like to know some whom i can relate to.
xx
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  #2  
Old 08-03-2009, 08:48 PM
MrsB2009 MrsB2009 is offline
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Default Me too

It was like reading a story about my life. I am 10 years older than you, and your story is my story. I have the SAME EXACT birthmark, placement-wise and everything. I'd love to get in touch with you. You can email me at miranda92480@hotmail.com

I'm really looking forward to hearing from you!

Lisa
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  #3  
Old 02-04-2010, 06:38 PM
samantha rainford samantha rainford is offline
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Hi, i havent got a birthmark but my 8mth old daughter has.... it is on her face (above her left eye) it is brown and hairs grow out of it.
Me and my partner have been to two diff doctors about it and we are getting it removed when she is 12mths+ old.... would love to hear more about other peoples experiences so i have a rough idea of what my baby will be going through. Thank you. Samantha x
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Old 07-08-2010, 01:56 AM
cherith cherith is offline
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Quote:
Originally Posted by samantha rainford View Post
Hi, i havent got a birthmark but my 8mth old daughter has.... it is on her face (above her left eye) it is brown and hairs grow out of it.
Me and my partner have been to two diff doctors about it and we are getting it removed when she is 12mths+ old.... would love to hear more about other peoples experiences so i have a rough idea of what my baby will be going through. Thank you. Samantha x
hi when i read your quote i was completely overjoyed because i have been searching for info so long my daughter also has the same birthmark she would be 2 in september and i'm scared of what she would go through when she starts school i would like to do something about it but i dont want it to harm her in any way so can u let me know how your daughters removal went please.
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  #5  
Old 07-08-2010, 01:59 AM
cherith cherith is offline
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Default my daughters birthmark

my daughter has a hairy dark birthmark over her left eye i would like some information on the removal process and the pros and cons of this procedure as i would not want any complications. is there anyway i can get in contact with samatha rainford seeing that we have similar situation with our daughters that is my email address is starlighttrini21@yahoo.com

Last edited by cherith : 07-08-2010 at 02:26 AM.
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  #6  
Old 02-11-2011, 01:14 PM
SpotTheJodie SpotTheJodie is offline
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Quote:
Originally Posted by samantha rainford View Post
Hi, i havent got a birthmark but my 8mth old daughter has.... it is on her face (above her left eye) it is brown and hairs grow out of it.
Me and my partner have been to two diff doctors about it and we are getting it removed when she is 12mths+ old.... would love to hear more about other peoples experiences so i have a rough idea of what my baby will be going through. Thank you. Samantha x
I am very new at posting on pages like this, hope I am doing it right. I am 42 and had a hairy nevus birthmark that covered my whole right arm and a "thumb print" on the very centre of my forehead. I had grafts on my arm and the "spot" was removed from my forehead leaving a thin line that you can't notice unless pointed out. My arm is scared and kids are cruel etc so I grew up with crappy comments. As for my "spot".....I really love my baby photos that have my spot it was quite large (a large thumb print) and I would have probably got a bad time over it if it was left there, but many times I have wished it was left alone, who knows It was removed when I was three. If you choose to remove the birthmark, please make sure you have many photos with such an individual and unique characteristic. My parents were told that I was "blessed to have such a mark" by some Indian people viewing me in my pram (way back in the late 60's) they were very amazed to see a child with such a mark Kids with hairy nevus birthmarks are the cutest kids ever I have no memory of having my spot removed.
I am yet to see a boy with a hairy nevus birthmark......I am wondering if it is a girl thing.
My very best wishes go to your daughter xx
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  #7  
Old 02-12-2011, 04:21 PM
newteacher newteacher is offline
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Default www.nevus.org

Wanted to let everyone know you are not alone. We have a huge support system on www.nevus.org for people with giant congenital nevi or facial nevi, etc. So much good info, support, and research taking place. The yahoo nevus outreach group is especially helpful.

Nevus hugs,
Debbie
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  #8  
Old 08-27-2011, 04:40 PM
fire pixie fire pixie is offline
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Default my story

Hi, my name is Sarah, I'm 22 and have a hairy nevus covering about a third of my body. It wraps around my torso and in the back it goes from my shoulder blades down to below my butt, and on the front it starts around the middle of my ribcage and covers some of my thighs (thank god it's not on my breasts!). When I was an infant my parents opted not to have any surgery because they didn't want me to go through any unnecessary trauma and decided they would leave that decision to me when I was 15 or 16, figuring surgery techniques would be better by then as well. When I was a kid I didn't care much about it, all I knew was that once a month I had to see my doctor and have pictures taken. Once I hit about 9 or 10 though, I started getting bullied a lot in school over it. It's really not visible but you know how kids play, so from doing my "gymnastics" stunts my shirt would ride up and kids would see my stomach or my side and from then on it was hell. I actually had to be pulled out of two separate schools. When I was a teenager I had self esteem issues, and almost opted to have some of it removed when I was 17, but decided everyone could get over my birthmark and I started caring less. I even managed to find sweet people to date. As an adult I've realized that as long as you don't make a big deal out of it, other people won't either. I've actually managed to date some people who thought it was neat and even pretty, and the person I'm with now is glad that I didn't have it removed and even gets a little sad over my biopsy scars.
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  #9  
Old 02-04-2010, 10:50 PM
missy missy is offline
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Hi and welcome to the forum!

Others will come by soon and share their experiences. I just wanted to give you a welcome. The worst part of the whole thing will probably be the anxiety... most babies come through completely fine!!

Missy
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  #10  
Old 07-08-2010, 01:57 PM
missy missy is offline
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Cherith,

Where are you located? Probably you need to take your daughter to a plastic surgeon?

Missy
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