I was born with Neurofibromatosis (NF) Type I and am the only person in my family to be affected by this condition. One of the primary ways NF affects me is through tibial dysplasia in my left leg. From the age of 2 through 17, I wore a brace on my left leg to protect my bone from breaking. While I enjoyed picking out the pattern each year for my new brace - cheetah print and tye-dye were 2 of my favorites - having a bend in my leg made it more difficult to participate in sports and other activities. Growing up it was hard at times to see my friends participate in activities I knew were too risky, but overall I have been blessed with the fact my tibia bone has not broken. I learned how to adapt and find sports that I could participate in, such as swimming and rowing. I have also come to love travel and cooking. I spend a lot of time in the kitchen on the weekends and weeknights trying out new recipes and exploring different flavor combinations like apple cider pancakes & coconut thai curry.
A large part of my experience with NF involved sharing information about my condition with friends and teachers. Each school year, I gave my teachers a letter sharing information about neurofibromatosis and how it affects me. When I was young, my mom helped me write the letters, but gradually this became something I did myself. While I was growing up, it was relatively easy to talk about my connection to NF because I could show people my brace - a tangible and clear sign that something was “different”. Now that I no longer wear my brace, I sometimes find that I need to explain NF in more detail or that it can be confusing to talk about. Besides café-au lait-spots, there are no other physical signs that I have neurofibromatosis. This has led me to be creative and I have learned how to be assertive when explaining how NF affects me.
My family members have been my biggest supporters over the course of my life. My mom has served on the board of NF Michigan for several years and volunteered in various capacities through the organization. When NF Michigan participated in a local run my extended family would come into town sporting green and blue NF shirts to show their support. My family continues to participate in various NF events in our community and I feel so loved through all of my family’s support day after day.
Living with NF has given me a lot of perspective over the years. To start, I always use the word “condition” when talking about NF and how it affects me. I don’t think of it as a disorder or disease because I am still me, I am just living with NF. In other words, NF has changed the circumstances of my life and how I live, but I strive to not let it dictate or disrupt my life. I will always be living with NF, but I live with it on my terms.
Through my experiences I have learned to challenge myself. Physical activity has never come easy to me, but this summer I had the sudden urge to go for a run. Instead of using my NF as an excuse, I embraced it and ran at the pace that was right for me, for the distance that was right for me, without worrying about how my running would compare to others. I felt so invigorated after my first run that I challenged myself to run at least a mile for 30 days, and I did. It was not always easy and I was sore, but at the end of the month I felt so accomplished and proud of myself because I ran in spite of my NF.
This year I participated in the peer review process with the Neurofibromatosis Research Program (NFRP). I first heard about NFRP in the spring of 2019 when I was nominated by Neurofibromatosis Michigan. I did not have much prior knowledge of the NFRP, but since then I have followed some of the CDMRP and NFRP’s research and projects. The review process was so cool and really gave me a chance to learn more about all of the amazing research that is being done to advance care for those with NF. During the panel, I enjoyed hearing from scientists and clinicians regarding the proposals in order to better understand their aims. I felt like a wanted and useful participant throughout the process and could tell that my consumer input was valued. I look forward to being involved with CDMRP and NFRP in the future and am so grateful for all the hard work that scientists and clinicians have put into exploring the condition and developing medicines to help diminish the clinical impact on those living with NF. The consumer advocate community does so much to advance the quality of life of those living with various conditions. Thank you to everyone who is involved in fighting for a future with more informed research and cures for those who are suffering. Research is a slow process, but we have come a long way!
Last updated Tuesday, January 5, 2021