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-   Living with a birthmark - my story (http://birthmark.org/board/forumdisplay.php?f=17)
-   -   large facial PWS (http://birthmark.org/board/showthread.php?t=2717)

PAmom 01-04-2008 01:22 AM

large facial PWS
 
Hi Everyone,
I am a 28 year old, happily married , mother of 4.
I have a wonderful husband, and amazing children.(ages 10 , 5 , and 1 year old twins )
My children are amazing ! They accept eveyone, no matter what they look like, or how they are different.
That is the # 1 thing we taught them .
I have a large PWS hemangioma that covers most of the right side of my face ( it is also in my mouth and down my throat )
It is mostly dark red with purple in some areas.
It is starting to thicken in areas, and grow bumps ( laser seems to take the bumps away for a while )
I have also noticed that my right side of my lip is slowing growing larger. ( Others haven't really noticed it yet, But I have been noticing the change over the last 3 years )
I have had about 10 pulse dye laser treatment( didn't really help much, the recovery was awful. The treated areas would turn black, swell, and bleed )
A few photoderm laser treatments ( lightened it some, plus the recovery was so much better. But I did get 2 scars from where the laser burned me and it blistered. )
A few years ago, I would have told you that the worst part of having my birth mark,was what I went through growing up.

But recently I realized that the worst part of my birthmark , is what my children are now going through .
I was tortured , and teased as a child and thought that I had finally
"out grew " that stage of my life . But now my children are living it ... WHY?
I'm SO frustrated. My children were all born perfect, yet they are being haunted by my birth mark the same way I was .
My 10 year daughter gets it the worst. No matter if I wear makeup or not, she still gets tortured. And believe it not , some of the parents are just as bad as the kids.
I just wish that my children could grow up without having to feel like they have to defend what their mother looks like !
Has anyone else here had to deal with this ?

JSchnickel12 01-04-2008 03:51 PM

Your post angers me. I can't believe that parents are as bad as the kids. Makes me so mad. I'm sorry that you are going through this! I hope that you can stay strong!

kaykay 01-07-2008 01:23 AM

what you are saying...i have the same thoughts about if i have kids, what they have to go threw.

hankbartenbach 02-09-2008 04:48 PM

Hi PAmom,

I am a 25 year old with facial PWS on my right side as well.

I have a question; when you where pregnant did your birthmark start to grow or was it after or before you had kids? The reason I ask is because some doctors think that hormones have a part in making our birthmarks grow. I have a friend that had two kids and both times had to have her jums worked on because they were growing rapidly when she was pregnant.

If you continue laser treatment and have maintenance on your PWS it will slow down the rate of having the bumps and maybe even the growth of your PWS. I started laser treatment when I was 5 years old and could not tell you how many treatments I have had now. I have had three plastic surgeries to remove the hypertrophia (thickness, growth) from my lip eyebrows and nose. I also have Sturge Weber syndrome which means I have PWS on the brain where I have it on the top of my head. You can see before and after pictures on my website at hankspws.com Also, if you would like to see what those bumps can turn into coble stones you can look at Geoff's website. No doctor was even willing to treat him before seeing Dr. Waner. His website is geoffspws.com


My fiancee and I are planning on having children after we get married of course, and it the thought has been in the back of my mind how children will treat them with a father having a birthmark and a mother that is blind.

When that time comes, I will teach my children what helped me get thru my childhood. I will educate them at their own level depending on the age about what a birthmark is and that God put this mark on me for a reason and that they should not be ashamed of what I have and to get them to understand that the person that is makeing fun of me is just making a fool out of themselves and to let it just go in one ear and right out the other. They are the one with the problems not us if they can not except a birthmark.

I hope this helps and if you have any question about my PWS just message me or email me.

Hank

nickbar 02-11-2008 05:38 PM

Hank your children will be amazing people; I know it. They will be kind and compassionate people with a lot more respect for people them most children are taught.

Armed with information, they will know how to handle curious or rude children.

HUGS.

C


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