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-   -   I am just me (http://birthmark.org/board/showthread.php?t=4112)

EllieMay 10-06-2010 01:42 PM

I am just me
 
I'm 29 years old and have a large port wine stain on the right side of my body it covers my right hand, arm, breast, part of my back and a hickey like make on my neck. I have just recently taken an interest in looking into birthmarks because of a class I am taking. I have to give a short speech about a research topic were all i do is inform the class about something. I was thinking and realized that I have caught people sometimes staring at my right arm. I've gotten so use to it that it doesn't normally bug me. I figure that if I can share some information with a group of fairly young adults about something they may never have seen before it would be a good idea.
I spent the first 9 and half years of my life wearing a burn jacket over my birthmark because the specialist closest to were my family lived didn't believe laser surgery was the best way. That was back in 1981/82. In many ways I am great full to that man because I have learned that having my birthmark is both a blessing a curse. He blessed me because research about what may or may not happen was to unsure for years after the treatment. He didn't know what would happen or if it would even work long term. I was also one of the lucky few that did not get teased about my burn jacket or my birthmark (at lest not to my face). Kids wondered what it was and took the explanation with no real problems. When I moved when i was around 10 years old i went to a children's hospital were a doctor told me that i didn't have to wear the burn jacket anymore. I regret that some days more then other. The jacket help keep my arms the same size and keep my hand from swelling too much. But not having to wear it anymore was just to exciting to think about. My mother could no longer get near me with the jacket and she was already having trouble with me about it. I wanted to be like everyone else (and to think now I want to be anything but like everyone else) and not have to wear something skin tight with a glove i couldn't feel anything through. When i moved i had to learn to deal with different kids and different questions but still i wasn't teased about it but they thought or at lest said it was kind of cool. I went to small schools and was in the same classmates for many years. In college I interacted with more people and they seems to accept my birthmark just as easily but then it didn't hurt that I could laugh at the fact that when i was cold I turned purple and used that as a reason for use to go back inside a little faster in winter when friend were having a cig.
the short and the sweet about me

I have a few question if anyone want to answer I would really like that.
How have you been treated by others?
What did doctors say to you about your birthmark?
Did you opt for laser treatment?
If you did how did that go?
Did you wear a burn jacket too?


When i was around 14 years old I was asked if I wanted to have laser surgery. At that time my only question was "Will it take stop the swelling?" He told me that it probably wouldn't but it would take care of the color difference in my hands. I didn't have a issue with the color it was the swelling that got to me. I turned down laser surgery when insurance would pay for it because personal I can not see my life without my birthmark it is now part of my personality. And after he told me it was like a rubber band plucking against my skin I really really didn't want to think about it.

missy 10-06-2010 09:33 PM

I have nothing really to add... just wanted to say hi and welcome!

Missy

LizH 10-13-2010 03:42 AM

Hi Ellie May!

I was born with a PWS on most of my right hand, arm, back, and chest. I'm 25 and have had over 15 laser treatments, from when I was very young till the current ones.

How have you been treated by others?
I was extremely blessed in that my parents kept me in small schools where kids accepted my PWS without question. Adults were & are the ones who asked questions most of the time. Entering the job market was when things got more difficult for me and I felt I faced obvious discrimination.

What did doctors say to you about your birthmark?
When I was a child they mostly talked to my parents. Once I got older they explained what may happen in terms of thickening, blebs, and bleeding. They also discussed the potential for lasers to work well or not.

Did you opt for laser treatment?
I was put into laser treatments from a very young age by my parents. When I got older (teens) I didn't peruse treatments after the dermatologist told me there might not be much the laser would continue to do.

If you did how did that go?
The lasering at a young age removed a few areas and lightened all of it. Recently I began treatments again after developing problems with bleeding. The Perfecta laser has had better results than the older laser.

Did you wear a burn jacket too?
No, never.


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