Neurofibromatosis

[livingwith]

Hello
My name is Robin Williams and I live in Vonore, TN. I have a disease called Neurofibromatosis and in 1995 I was diagnosis with cancer. Neurofibromatosis causes tumors on the nerves and most are benign but for unknown reason I had one on my leg that was cancer. It was as big a a softball and it was removed at the VA hospital in Johnson City, TN. I had 30 radiation treatments and was told I had a chance to get cancer in my lungs or brain.
Its was 13 years on January 29,2008 and I’m st...Read the full article

[lterry]

Hi Robin - thanks so much for posting your story.

I am a school nurse and was wondering what your early symptoms were and when you became aware of them. Also, did it take a while for the medical community to address your concerns?

I am working with a young man, and his symptoms (and my concerns about them) have been largely dismissed. Any insight that you can offer would be greatly appreciated.

Thanks so much!

Liz Terry, RN