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bfull 04-29-2005 05:10 PM

My Story
Hi everyone! I am new here and* I thought I would share my story of growing up with a hemangioma....

I was born in 1980, I was born with 3 birthmarks on my neck and one on each leg...and a strawberry on my head.* Two of my birthmarks went away and the one on my right leg has always been with me.* This birthmark covers 3/4 of my leg and has slowly grown in size over the years.* My parents really did not show concern until I started having pain in my leg.* I was refereed to a specialist at our local children's hospital when I was 13.* They told me that I would have to go through numerous painful operations in order for me to correct my problem....and also informed me that I may never walk normal again after the operations.*

I only wear shorts around the house and on the rare occasion that I wore shorts to school the kids would always ask me if I had gotten burnt or something.* The coloring I am OK's just the swelling that really bothers me...even if I am wearing jeans you can tell that there is a big lump there.* I have always bruised easily on my leg and it makes me very self conscious.*
My parents decided against the operations (mainly due to the fact that my health was not at risk and it would be purely cosmetic) but I wound up on bed rest when I was pregnant for a fear of blood clots in my leg.* I wear a medical stocking on my leg when it starts to get that crampy feeling and so far so good.*

All in all I would say that I led a normal childhood...everyone has a blemish..some bigger than others.* I still played sports in school and I still had lots of friends!*

hankbartenbach 04-29-2005 07:51 PM

Re: My Story
Hi bfull,

Welcome to the site.

I made this post into its own topic so people can find it easier.

I am 22 with PWS.

So have you been diagnosed with H's on your neck and legs? If you are interested in getting them removed there are several doctors in the resource section on the front page of this site.

What state do you live in? If there is no doctor in your area someone on this site might know of one in your area.

Thanks again for sharing your story.


bfull 04-30-2005 05:24 PM

Re: My Story
Hi, thanks for moving it..

I am in the dfw area in texas...when I was 13 the dr. told me that I would have to fly to Denver b/c there was not a local doctor that could get the bleeding in my leg to stop.* I now only have one visible birthmark.

hankbartenbach 04-30-2005 08:57 PM

Re: My Story
To bad you did not go to Denver we might have met.

Back then Dr. Morelli was the only one in the Midwest with a Pulse Dye Laser machine. I am positive that is who the doctor was talking about.

There is several doctors in the resource section on the front from TX. Two are in Dallas.

I suggest looking at one of them and getting yourself an appointment. Bleeding is always going to be a risk, and they have technology now to prevent massive bleeding. I am a deformed cradiod artery and have always been told that if I get any major cuts on my face I could bleed to death. No doctor even want to try surgery on me, until Dr. Waner in NYC. My first surgery back in Feb I only lost 4 tablespoons of blood. I call that crazy.

Talk soon.


bfull 05-01-2005 07:18 PM

Re: My Story

Thanks for the reply...I am not sure that I want surgery...I think I just like the support ..knowing there are other people out there in this world with the same situations gives me comfort in knowing that I wasn't the only one to grow up with this.* There is so much info on this site..don't even know where to start lol. Take care

bfull ;)

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