I was diagnosed with NF in the early 1970s, when I was about 17 or 18. There were a few bumps on me then, and my dear sweet late mother wanted to know what they were. A Navy dermatologist lived next door and knew exactly what neurofibromatosis was.
As I have grown older, many more fibromas have developed. It is not unusual for someone to ask about them, usually in a nice apologetic way, but also sometimes they can be very rude, especially children. Most of my working career has been on the radio, thought I did for a short while drive an 18 wheeler, and I've had understanding employers for the most part through the years, though it has held me back from jobs.
I have a philosophy and mean nothing bad by it, but one does not have to look far to find someone worse off than they are. I want to do something to bring attention to the disorder on a national, maybe international basis. I will use my 45 years plus radio experience to my advantage. When (that is when and not if) I win the big bucks in the lottery, I am going to have an NF awareness van and drive across the USA.
Motto It's not the questions, but the answers that get you in trouble.
Hobby Old music (60's-80s) and, this may be a bit strange, watching freight trains.
Superpower Winning lotto numbers so I could help those with NF.