Living with Neurofibromatosis

I have nf1, my mother has it, and my youngest daughter has it, right now she is 13 with only the cafe’ au lait spots,(which she hates, but I told her some guy is going to fall madly in love with her, and her spots, period) and she is gorgeous, perfectaly round face, out of the 3 of us, I had the abnormal growth of bones, so the right side of my face and body is longer than the left.

I am 40 and as I get older, the more fibros appear. It aggrivating living in such a “perfected driven world” to watch tv, or commercials, then look in the mirror, and know, that I will NEVER look like that, and its not like its fixable with drugs. I have had some surgically removed, and it hurts like hell. It becomes more difficult with my youngest when she looks at the world through nf eyes, to constantly have feelilngs of inadiquate beauty.

Thank God for my husband, he still is madly in love with me, even though I feel like I have the skin of a toad. I have decided however that if a little kid asks me whats wrong with my skin, I am going to tell them its because I didnt eat my vegetables when I was a kid. I hate watching those stupid shows like americas next top model, I want to slap those whiny pathetic girls let them live a month in our skin, let them have the stares, the looks, let them catch one of the bumps on a zipper, or accidentally scratch it. Let them look in the mirrior everyday, knowing that they will never measure up in beauty as far as the world is concerned.