Being Different is Beautiful: Caroline's Story

Leading NF Advocacy
Building NF Community

Being Different is Beautiful: Caroline's Story

Author: Caroline Hunt

Published On: 04/28/2022

Every year in May, the NF community around the world comes together to spread awareness about neurofibromatosis during NF Awareness Month. Affecting every 1 in 2,500 births, neurofibromatosis is the most common genetic disorder that most have never heard of. Our mission each May and every day is to help make neurofibromatosis a household name where the world can know what NF is.

This year for NF Awareness Month, we need your help to spread the word! Neurofibromatosis affects each individual differently – no two cases of NF are the same. The variances of NF can make navigating NF care challenging, and one can never be 100% sure of what comes next. However, in those variances and differences, we find that being different is beautiful.

With the help of our friend, Caroline Hunt, we want to help spread the word that “Being Different is Beautiful.” Caroline has NF1 and has used her platform in the pageant circuit to not only raise awareness of neurofibromatosis, but also share her story and challenges with communities across the country.

“I was diagnosed with NF1 when I was six months old. My parents said when they heard the diagnosis they were scared, because they didn’t know what NF was or how it would affect me. In elementary school my neurofibromas or spots didn’t faze me much, it was just a part of who I was. However, when I got to middle school, I started realizing I was different, and to me being different was a bad thing, being different made me ugly. People would make remarks about how I look – my spots, my neurofibromas – and being a girl in middle school, those words hurt. I would always hear, “Sticks and stones, may break my bones. But your words can never hurt me.” It’s not about what those kids said to me, it’s about how they made me feel- and they made me feel bad.

I started competing in pageants at a young age but started getting more serious about them when I started high school. My freshman year was when I established my platform “Being Different is Beautiful,” advocating and educating people about Neurofibromatosis. I thought my platform would be a great opportunity for me to tell more people about. NF. My goal through my platform is even though someone might look different because of NF, they too deserve to be treated like a human

I remember how it felt to be on the other side - the one people were calling names or saying things about, just because I looked different. Through pageantry I have been able to tell so many people about NF, and how it affects me and many others. My goal is to not only be an advocate for NF, but be an advocate for kindness. I want to encourage people of all ages to treat others with respect and love. Pageantry has also given me so much confidence and comfort in my own skin. I learned to treat myself with kindness and love while I was teaching others about kindness and love. I never thought my platform would come as far as it has, and I am so blessed to have this opportunity to share my story.”

Because of the challenges she has overcome and the impact she has made raising NF awareness in the pageant circuit and beyond, we are honored to award Caroline this June with the Paul Bodner Memorial Award at Chicago's 3rd Annual NF Hope Concert.

Caroline’s story is one of many in our NF community, and we want to hear from you! Throughout the month of May, we want to share your NF stories and spread awareness through the many beautiful faces of our NF community. Using the hashtag #BeingDifferentIsBeautiful, you can post your story on social media, or email your story to us at admin@nfnetwork.org. We would love to see pictures of you and your family, as well as other ways you are celebrating and spreading awareness for NF Awareness Month,

We hope you’ll join us in spreading the word that #BeingDifferentIsBeautiful!

Want to view archived newsletters? Click Here!