I wanted to post this message because of something that came to mind as I was reading one of the boards about how we found out about neurofibromatosis. It was 42 years ago. Not as much was known about nf as we know now. We where told about the shorter life expectancy of people with nf and that they do not live beyond a certain age; we know now that is not the case. That was how little was know about nf at the time. This is one of the reasons we must get as much information out about nf as we can. I would like to hear from you. How old where you, and what where you told, when you or a family member was diagnosed with neurofibromatosis?
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