What is Neurofibromatosis
Neurofibromatosis is an autosomal dominant genetic disorder. Neurofibromatosis type I (NF-1), also known as von Recklinghausen syndrome, comprises, along with neurofibromatosis typ...
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I felt I should start this discussion we tend to become so down by rude comments I want to commend some actual "god send" people. Once this lady ask me very nicely "can i ask what those bumps are "when i told her she looked concerned. She ask if they were fatal. I told her no. She said oh, "I ask b/c my cousin have bumps like that but they don't know what they are".I dunno if she was just making an excuse to ask me ,but she seemed genuine. She said she was gonna look it up on the internet. So at least she was interested in reading about my condition rather than stare or make rude comments. I thought was really smart.
My close friend Ingrid always says"that doesn't matter" Don't get surgery. I know for a fact if she EVER connected with a guy with NF she would be with them despite the bumps. She is an awesome friend. She is right these shouldn't matter,but to some people they do. Posted on 06/23/09, 12:06 pm |
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You have to ask yourself. Lets say NF only caused bumps, no other problems, just bumps. Now suppose you didn't have NF. Would you go out with someone who judged others by their looks, even if it were somthing they coldn't help? Life is fickle. Things happen and people change. You may look like a super model one day and a drunk driver or stalker could change your face and life for good.
Besides just being pretty on the outside doesn't really make you pretty or handsome. Look at that couple from the MTV show The Hills, Heidi and Spencer. When they open their mouth nothing even close to pretty comes out of it. 
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you are absolutly right. I always wonder if people think about things like that. Or do I because of my condition. I think i would still be down to earth even if I didn't have NF. I wonder if people ask themselves...what separtes them from everyone else when the lights are off? What you look like doesn't matter. It's only what you know that separates you from everyone else in total darkness....
Some people woukd be like huh? I know what it means and it is so true. Yeah Heidi Spencer is PLASTIC!!! She was born with a silver spoon in her mouth. She has no idea how good she has it (financially). In the dark I would think she was cave woman abandoned by her parents. Everything that comes from her mouth is gossip or negative. Sometimes it makes no sense at all. You are right life can be fickle.
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I do worry about the attractiveness factor if my NF gets worse, but I do believe in my heart my husband will stand by me no matter what.
So far I have been lucky and the bumps are just like pimples or goosebumps all the time. It is true about what they say about beauty, but perfection is constantly shoved in our faces. it seems that no matter what everyone wants something different than what they have. sure i wish all the time i could have another child without worrying about passing it down or that one day i might have complications but life is for living. although i must admit i am going through a worrying patch right now when again i am obsessed about the fact that i have this, but we are all given challenges and this just seems to be mine.
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