Does anyone else have neurofibromatosis?

If so, how have you delt with it in your life? What are your symptoms, and where does it occur on your body? I have NF and my entire calf is covered with a purple spongy feeling loose muscle under a thin layer of skin, I am severely self conscious (sp?) about it and always have been. I also have over 30 cafe au lait spots on my body.

You said your family has it too? I feel like a freak in my family, for lack of a better word, because I am the only one, they don't know where it came from. I also am starting to get tiny little bumps, that look almost like ingrown hair bumps, but they aren't, all over my stomach and part of my face...I went to a doctor one time and he said that it would kill me to even attempt to remove the neurofibroma from my leg. That was about 8 years ago though, so maybe things have changed since then. Thank you for your response!

I have NF and My entire back and neck are brown. My first surgery was 15 years ago to remove a 5lb tumor. I have had to go back three more times to remove excess skin or bulk. I hate it because I can't wear strapless shirts or a formal dress. I'm very self conscious. I have cafe au lait spots as well. My son has quite a bit of the spots also he is 16. My mom, grandfather, aunt, and four of my cousins have them too. I know how you feel I have to see it every day. My grandfather had bumps that covered his entire body and my mom has them too. I hope neither of us have them like they do. The only symptoms that I really have is backaches like my back feels like I have been on my feet all day.