Stories of NF: Cherilyn B.

I was diagnosed with NF1 as a baby; I don’t know exactly when, but I’ve known as far back as I can remember.

I have a large tumor on my neck/right cheek near my ear, with less than half a dozen smaller fibromas over the rest of my body that only just started to appear within the last few years. I’m lucky that I haven’t had any major medical issues, notwithstanding hearing loss, ringing in the ears, mild scoliosis and bad vision. I have so far not had any of the other medical compilations that occurs with NF.

Living with NF has always been hard, especially as a kid. With such a large tumor on my face it was hard to hide and I was always picked on in school. I never could explain my condition or how I felt, as I understood very little about it myself. I had very few friends growing up and I also never really had chances to meet others with NF until a few years ago. Being able to talk to others going through similar situations has helped me cope with past and present issues. I even got a tattoo of the NF logo and a teal/green ribbon. Since then I’ve had many people as me about it and I have been able to spread awareness.

In August of 2016 I had my first major surgery to remove an egg size amount off my tumor. While complete removal is impossible, I so far haven’t had any changes or the rest of the tumor growing bigger. I recently started to do more research about NF and trying to find a geneticist in my area to help me. With more medical issues seeming to pop up the older I get I want to make sure that my NF is the cause behind it.

I work in a hospital kitchen; it’s busy but I love my job and the people I work with are great. I love animals (except bugs, especially spiders). I enjoy being outdoors, the beach, hiking, riding my bike and I love the thrill of roller coasters. I am happiest spending time with family and friends, trying new things and learning new skills. I’ve always wanted to go skydiving and one day I will save up to go. I would love to own a horse as they are my favorite animal and I love to horseback ride. I would also love to meet my soul mate…sooner rather than later.