A neurofibromatosis diagnosis isn’t always what people see when they ask Dr. Google. I never felt that having NF held me back, as my affliction is quite mild and mainly dermatologic. Actually, as a child, I felt somewhat special as I was always told the NF is very rare and anytime I saw a new doctor, they were quite interested. When I was a kid, there wasn’t that much know about NF but now, there is a lot of support available and having NF isn’t necessarily the end of the world. I often say, pointing to my face, that this doesn’t raise money, but it brings comfort to parents who see a strong and successful woman who wasn’t limited by neurofibromatosis.
Had I not been diagnosed with NF, I would not have encountered all the wonderful people at the Children’s Tumor Foundation. Since our first meeting at the 2012 New York City Half Marathon, I’ve made some wonderful friends and fundraised to support critical research, and for that I am grateful.
Because I have such a bold and strong personality, people don’t realize that I am somewhat shy in situations where I don’t know people. When I was a teen, I was very self-conscious about the freckling under my arms. In speaking with parents of children with NF, I realize that my problems were minimal compared to what they are going through with their kids.
Now, I am coping with another rare disease (even more rare than NF) and working with my doctors to find an effective treatment. It’s frustrating and scary, but I have learned how resilient I am and this experience has validated how loved and supported I am by my family and friends.
People who know me well, know that I love to quote movies and famous people. The realist in me in me lives by the philosophy, “Don’t pee on my leg and tell me it’s raining,” but the optimist in me says, “Life may not be the party we hoped for, but while we are here, we may as well dance.”
So let’s keep dancing.
Stacey Fried lives with neurofibromatosis type 1. She is a Human Resources Executive and lives in New York, NY.