headshot of Susie who has brown hair, glasses and a big smile.

Finding My Way Living With NF (Breaking Barriers Spring 2022)

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This article is part of our Breaking Barriers Spring 2022. This installment features articles about several young adults with disabilities ranging from tumors to limb differences to processing disorders and lupus who tell their stories of what it has been like for the. If you'd like to read more stories from this issue, please subscribe to Breaking Barriers.

I was born with neurofibromatosis (NF) and found growing up with it was never easy. In particular, high school was hard because I felt so different from my friends and classmates. That was most true during my junior year when I had to go to a program at the Kent Transition Center, which was designed for people who wouldn’t be going to college. The medical issues that come with NF have been hard, too. NF is a genetic disorder of the nervous system. It mainly affects how nerve cells form and grow. It causes tumors to grow on nerves. I have had quite a few MRIs, which require sedation since I am claustrophobic. I also had two surgeries due to NF. The biggest surgery I had was for a neurofibroma that was pressing down on my spine, making my right foot drag. If I didn’t have the surgery, I wouldn’t be able to walk again. It was a long recovery that had me in and out of the hospital. Everyone who has NF experiences it differently. For example, I have some bumps on the surface of my body but others might have a lot more. NF can also cause scoliosis, which curves the spine. In my case, I have a lot of pain if I stand up too long. I do little jobs like babysitting and serving as the disc jockey (DJ) for the Calvin College men’s hockey teams and the Grand Rapids Christian High School team. It’s a lot of fun because I get to play music while watching my favorite sport. I started liking hockey in seventh grade when my older brother played. When I went to high school, my friends played hockey and I’ve loved it ever since. My senior year was the best. We had a very good team, and on senior night I got the number one fan award, flowers, and a candy necklace. My picture from that night was in the school yearbook. One year for my birthday I got an old Calvin College jersey with my last name on it. I’ve been wearing it to DJ hockey games ever since.

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