Stories of NF: Michael S.

I was 4 years old when I was diagnosed with NF1, but there were signs early in life that there was something wrong. When I use to run, my legs would run out to the sides, due to a low center of gravity. It also affected my motor skills. I had to be stitched up three times before I was 18 months old, as I kept falling down our back stairs, and the nurses use to think that my parents were harming me, for me to be hurt that many times in a short time period.

When I was in school, I had a teacher aid that helped me with several activities to help improve my motor skills. At times, some situations get me stressed out and I get frustrated. I try to not let it affect my life too much in the future, but as long as whoever is with me understands, then that’s the main thing.

Hanging out with my brother and going on adventures are a great way to spend time out of the house. I work as a workshop assistant in a welding and fabrication workshop full time and also do voluntary work as a guard at a heritage railway.

When I tell people about my disorder, most of them have never heard of it before, but when I tell them the basic facts on it, they gasp in shock and start to feel sorry, but then they support me and want to learn more about it.

On days when I feel low, I just remember the phrase “I may have NF, but NF doesn’t have me,” as it helps me get through the tough times.