By Kelly Rulle
Recently, I was asked the following, “What's one "survival tip" you'd like to share with other people living with neurofibromatosis (NF)?” So many things ran through my mind: dealing with bullies, hurtful comments, or painful days, how could I pick just one? But if I had to say just one thing, it would be, “Learn!”
Keirsten is a nine year old girl who loves her family and friends. She was diagnosed with NF1 at birth. She had many of the signs and symptoms: multiple café au lait spots, neurofibromas on the skin, freckling under her arm and groin area, a tumor behind the left eye (optic glioma), skin defects, and short bones.
When I was one year old, my parents noticed I had many cafe au lait spots. They took me to a doctor who said that it was possible that I had NF, but wouldn't be sure until I was older. When I was 6 years old, we discovered nodules in my eyes. Then we were certain I had NF1.
AJ was diagnosed with NF1 when he was just 6 months old. Having NF means that AJ has to try harder to do things that most kids might think are super easy. It does not stop him though. AJ is a thinker and a do-er. If he can't do something one way, he'll keep trying until he figures out a way that he can. AJ thinks that the unknown is the scariest part of having NF, but he does not plan on letting it stop him from reaching for his goals though.
We’re excited to announce the winner of the 2017 NF Awareness Month “Where in the World do you End NF?” photo contest!