25 Year Old w/ Hemangiomas - Vascular Birthmarks Foundation Forum
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  #1  
Old 03-19-2011, 08:58 PM
Kimberly Kimberly is offline
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Join Date: Mar 2011
Posts: 1
Unhappy 25 Year Old w/ Hemangiomas

Hi,

So, I actually found out about this website on the back of a Doritos bag. I'm 25 and I have two hemangiomas. One that covers most of my right hand, and one that raps around half my stomach and 1/4 of my back. Growing up I had two laser surgery's on my hand. My hand is the one that causes me pain. It swells, my fingers are crocked, I have less strength, and it's just frustrating to say the least.

The one on my stomach/back is flat, it doesn't grow any more. It's actually been fading over the years. But my hand's still grows. I've seen every surgeon and dermatologist I know of locally, and no one wants to treat me.

The Vascular Surgeons say I need a Hand Surgeon, and the Hand Surgeon says I need a Vascular Surgeon. The Dermatologist don't wanna touch it either. One Dr. told me that my condition was so rare that there was no Science to treat it, so I gave up.

I guess because mine is not life threatening and I'm not a kid no one wants to help me. It's very discouraging to hear, but I guess for me it's true.

Any ways, my main fear is that it will grow on a vital organ. My mom had one on her Ovaries and lost them due to it. My grandma has one on her brain and they say it's the cause of her Dementia and Alzheimer's.

So, that's basically the short version of my story. Thanks for listening.
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Old 03-19-2011, 10:17 PM
missy missy is offline
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Join Date: Apr 2006
Posts: 1,729
Default

Hi and welcome!

Did not know we were on the Dorito bag. I seem to remember some snippet about Evan Ducker being on a bag of Doritos.

Anyway, what you have is probably not technically a hemangioma, since they always go away as a child grows up. I'm not sure what you do have ... you do need to be seen by a specialist. It isn't going to get better with no treatment.

So, where are you located?

One thing I would do is to write to Dr. Levitin via http://birthmark.org/experts.php and send him a photo of your hand. He might be able to tell you what your next step is.

Missy
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  #3  
Old 05-24-2011, 06:21 PM
rosie rosie is offline
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Join Date: May 2011
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Default unfortunatly not true

Sorry Missy,

i have a Cerebral Hemangioma, and the blood vessels are both inside and outside my cranium, it has never gone away and never will.
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