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 Neurofibroma on my scalp 
Hi. I am a 34yo male. I have been diagnosed with Neurofibromatosis a few years ago. It is hereditary. My great-grandmother had it, my grandmother had it, my mother has it and I have it. My other siblings did not inherit the gene at all. The neurofibroma I have is only on my scalp. I have quite a few of them. I’d like to have them removed but I”m nervous. I constantly wear hats to hide it. I am very self concious about anyone taking my hat off in public and I have a few things coming up where I can not wear a hat and I”m just nervous what people will think/say. I just wanted to share and hope someone has similiar stories. It would be nice to find a support group. Thank you.
September 2009
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