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Stories of NF: Cherilyn B.

By June 8, 2018December 5th, 2023NF1, Story of NF

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.



Motto Be who you are and say what you feel because those who mind don’t matter,
and those who don’t mind matter.

Superpower Ability to communication with animals

Song It’s My Life by Bon Jovi