Courtney Willoughby

To some people, neurofibromatosis is a curse. It’s a disorder that causes painful tumors, deformities and life threatening illnesses. For me though, it’s something that has made me into a better person, and it’s something that I am beginning to appreciate.

I am the only person in my family living with NF, meaning I was a “spontaneous mutation”. For a long time, I felt like an outsider, I felt different than everyone else. All I wanted was for someone to tell me I was going to be okay, and that my NF would not take control of my life. Although I wanted to be reassured about my condition, I didn’t want any of my friends to know about my NF. My friends had no idea that I was diagnosed with a brain tumor, scoliosis, daily chronic headaches, growth hormone deficiency and two tumors in my pelvis all within four years of each other. It sounds silly; to be afraid of people thinking you’re a “freak” for having some kind of disorder, but high school can be a cruel place. All anyone wants is to fit in and be normal. Nobody wants to be the “sick kid” or the “weird one”. All I wanted to do was be a normal teenage girl.

It wasn’t until I attended an NF symposium in May of 2011 that I began to understand that I shouldn’t hide my NF, because it makes me a special and unique individual. While I was at the symposium, I had the amazing opportunity to meet Reggie Bibbs, from TLC’s My Brand New Face. Reggie also has NF, and it was through his great bravery and determination that I was able to find my own strength and courage. During Reggie’s speech, he said “Without fear we have no courage, and without courage we have no fear.” Those words stuck with me for weeks after the symposium, and really made me think. Why was I so scared of people finding out about my NF? Why was my fear getting in the way of me living my life to the fullest? That was when I decided it was time to “come clean”, and tell my friends about my condition.

It all started off with a simple note posted on Facebook about my life, and how NF affects me. To be honest, I was absolutely terrified of how people were going to react to my post. I was definitely surprised when I came to school the next day and had people coming up to me and hugging me, saying that I was “amazing”, “strong” and “brave”. I was so happy. I went home that night the happiest I had been in weeks. I felt like a huge weight had been lifted off my chest, and that I no longer had to hide anything. Soon after my note was posted on Facebook, I decided I was going to write an article into my local paper to try and raise awareness for NF. The article was a hit. People were coming to me saying that they “had no idea about my condition” and even people were admitting that they had no idea what NF was!

NF has sculpted me into the person that I am today, and it has made me a more honest, down to earth and truthful person. Although I have faced many different obstacles with NF throughout my life so far, I’m slowly learning that I can get past them. I used to think NF was a curse, and that I would never be the same as anyone else. Now I know that it is far from a curse, it is actually a blessing in disguise, as it has made me a stronger and more determined person.

Courtney Willoughby