Living with NeurofibromatosisThis section is a place to share stories about Living with Neurofibromatosis Below are entries of those who have already shared their stories. We hope that you find their experiences helpful to your own situation. You may also Help others by sharing your story. To quickly access health information from your website's browser, download NF1 and Me 
Sometime’s I get so mad I curse NF I was diagnosed in the early 90’s at first I thought ok how bad can it be but boy after a few years it has gotten bad I use a power chair and a walker,Thing’s That I can not do I was to a Dr recently I was told there is one on the C7 I do have multiple tumor’s also I have found very small one’s on my scalp .There are time’s I just am about ready to shave my head because they are so bothersome . I hate them sometime’s people say oh it’s not that bad I look at them and say wanna trade shoes ,The things I use to do I did try other ways of doing them but that got to be impossible .There are no support groups near me In My family there are I have 3 sisters and a brother none affected by NF ,I have a cousin who has it and heard of some uncle’s and aunts none willing to talk about it I wanted to share my story with other’s I am 37 and live In Pennsylvania
July 2008
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