Im must be the only youth - Page 3 - Vascular Birthmarks Foundation Forum
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  #21  
Old 11-13-2004, 01:26 AM
eprmo eprmo is offline
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Posts: 149
Default Re:Im must be the only youth

Hi,, I am Jaci's Mom, Elissa..I too am glad you started this post..

My daughter Jaci,,is my gift in life, and I would do anything for her...she is open to treamtment now,,and has had good results from her surgery this past summer. She feels she looks great and that is all that matters...She may have more in time,,, but at the present time,,she is quite contented with herself in every which way..

I feel lucky to be her mom..

Elissa
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  #22  
Old 02-09-2005, 02:50 AM
Aariahsmom
 
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Default Re: Im must be the only youth

Hi all! Am I still concidered a youth?????? I am 23!! Although I am not here for myself, my 7 month old daughter has a hemangioma in her left armpit. But the main reason I am here is because I find all of this fascinating and hope to one day become a doctor. I also want to say that ALL of you are very coragous people and I admire each and every one you weither you are 8 yrs old or 80. And I think I can speak for everyone when I say..... THANK YOU for trying to help everybody. This site is a great place to come for info!!

:-* :-* :-* :-* :-* :-* :-* :-* :-* :-* :-* :-* :-* :-* :-* :-*
Hope to talk soon!! ---- Audra
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  #23  
Old 02-09-2005, 03:14 AM
hankbartenbach hankbartenbach is offline
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Join Date: Oct 2002
Location: Nebraska
Posts: 538
Default Re: Im must be the only youth

Hi Audra,

Thanks for the support, I know that all the people on the site apreciate it.

I am glad you found this site it helps all of use in different ways.

Hank
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  #24  
Old 02-27-2005, 06:32 PM
ed
 
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Default Re: Im must be the only youth

Hi everyone~

I'm new to the site and I am 18 years old. I have a birthmark right under my nose since I was born. I also have a twin sister but she doesn't have any birthmarks which I am very happy about because I am a guy and I would hate to see my sister having a birthmark on her face. I definately would have asked god to put it on me than her. But elementary and high school years were pretty tough. Kids would stare but after a while you would get used to the staring. But some would laugh which is quite depressing. After a while, people get used it and I've made tons of friends. I have a girlfriend now for 3 years and I love her very much. She's very supportive and we've never talked about my birthmark. I've once indirectly hinted/ask her how she feels about my birthmark and she told me that she doesn't mind at all.

Many times in my life, I have thought I was the only one in the world to have this problem because I haven't seen anyone else like this. But after, I would think that many other people have disabilities which are not only cosmetic.

Thanks for reading my long rant.. and please excuse my english~

Ed
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  #25  
Old 02-27-2005, 08:16 PM
hankbartenbach hankbartenbach is offline
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Default Re: Im must be the only youth

Hi Ed,

Welcome to the site. I am 22 years old with Port Wine Stain/ Sturge Weber Syndrome (PWS/SWS) on the face and head.

I know exactly what you where talking about going thru school being laughed at, the pointing, staring. After awhile you just get use to it and does not bother me anymore.

The reason your girlfriend said she does not mind is at all is because she does not see it. She sees you for who you are and that my friend is what counts in a relationship. She sees right past your birthmark, so did your classmates after they got use to it. I was pretty popular myself when I was in high school, everybody know who I was. I bet the only thing she does not like about your birhmark is how other people treat you because you have it. Trust me I have been there and done that.


Before coming to this site and other sites, I felt the same way. I thought I was the only one out there with this condition, boy was I wrong. I now know hundreds of people like us. I have meet some of them personally at a confrences I went to for SWS.



Again am glade to see you here, and hope to hear more about you and how your birthmark has efected your life.
If you ever want to talk I am here for you, you can either post questions for everybody else to see or you can email me personally, my email is in my profile.

Hope to talk to you soon.

Hank
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  #26  
Old 02-27-2005, 09:06 PM
eprmo eprmo is offline
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Default Re: Im must be the only youth

Hi Ed,

Sometimes it must feel that you are the only one with one,,..My DD had one on her nose and grew up , I guess, feeling the same way..She has made many freinds and has never let her birthmark stand in the way of her life. She is out-going, and assertive.

Attitude makes such a big difference...it sounds like you have a strong and postive one and my belief is..... that is the most important thing in life....LOVING & RESPECTING YOURSELF!!!!!

welcome to VBF

Elissa
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  #27  
Old 03-01-2005, 03:40 AM
ed
 
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Default Re: Im must be the only youth

Hey,

Thanks for the support~

I'm actually quite used to it now and rarely do I even think about it. Though its hard sometimes to go to new places or meet new people, but I try to be outgoing and let people see the real side of me.

I was just wondering.. right now, my birthmark is really just a black mark that looks like a mole in the size a quarter or alittle smaller under my nose. Its flat and its never hurt or gave me any problems other than cosmetic problems. Its been growing since I was born and although the growth isn't very fast, I have noticed it growing alittle since a couple yrs ago. I have read up this site about birthmarks and I'm guessing I have "deep" hemangiomas? Not quite sure but which type it is, but thats just my guess. Anyways I'm just wondering what will happen in the future. Will it grow even larger and affect me not only cosmetically but make it life threatening? Thanks for the help

Ed~
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  #28  
Old 03-02-2005, 12:08 AM
hankbartenbach hankbartenbach is offline
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Join Date: Oct 2002
Location: Nebraska
Posts: 538
Default Re: Im must be the only youth

Hi Ed,

You do have the chance of it growing larger. I suggest looking into having surgery to have it removed, before it starts causing problems, like envolving into the nose, or problems breathing thru your nose. Since the area is very small it would probably take only one surgery. If you look at the front of this site, click on resources and then find a physcian. Then go to your state. It you are not interested in surgery a doctor from this site can at least tell you for sure what kind of vascular birthmark you have, and what options you have.

I hope this helps and if you have any other questions please ask we are here for you.

Hank
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  #29  
Old 03-02-2005, 02:52 AM
ed
 
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Default Re: Im must be the only youth

Hello Hank,

Thanks for the help. Just wondering where I could get help since I live in Vancouver BC Canada (not in US) which I see do not have a lot of doctors in this field. Do you have any suggestions what I should do?

Thanks~
Ed
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  #30  
Old 03-02-2005, 05:04 AM
nickbar nickbar is offline
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Join Date: Aug 2003
Location: Pacific Northwest
Posts: 1,078
Default Re: Im must be the only youth

Hello Ed,

Are you willing/able to go to Seattle Wa. for treatment? Also, at the end of the physician's list there are a couple docs listed in Canada....not in Vancouver B.C. though. I am in Vancouver WA U.S.

Let me know if you are interested in the Seattle option.

I just wanted to say that I think it is best if you are diagnosed by a derm. or vb specialist. Hemangiomas are of infancy and involute by age 10 usually. What you describe doesn't sound like a hemangioma because they don't grow past 18 months old. If you'd like to send a picture of your birthmark to the "ask a doctor" on this site, Dr. Hochman might be able to give you a better idea what it is.

GOOD LUCK

Corinne
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