I was six months old when I was diagnosed, so I don’t really remember it, but NF has always impacted me. Growing up with NF, I lived in a lot of pain (still do) but then I didn’t know what it meant or why I was feeling it, until I was older and could understand it better. I have a lot of café au lait spots as well as a plexiform and cutaneous and subcutaneous neurofibromas. However, when I was younger the plexiform was the most pronounced. Kids in school used to make fun of me for it and call me an “alien” because they didn’t like the way it looked. It was beyond hurtful and even when I could understand my diagnosis I couldn’t understand why people were so mean. And while people still make rude comments and I still don’t understand how people can be so cruel (34 years later), I’ve made it my mission to raise NF awareness and help everyone I possibly can who is affected by this condition.
Living with NF impacts my life on a daily basis. I live in constant pain due to the neurofibromas and the plexiform causing pain. It is unknown to me how and why they hurt or which area or neurofibroma will hurt when. Also, because I have so many café au lait spots people often question why I have so many. Additionally, because my plexiform is so visible, people on a daily basis ask what it is, why I have it, if it’s contagious, what is wrong with me and any other single question you can imagine. It really is beyond hurtful (both there physical and emotional pain). But, it has made me stronger.
I do not think there has been one single defining moment, but rather a collection of moments. I think because I was diagnosed at such a young age, growing up with condition is so much a part of who I am. But that is not a bad thing AT ALL. NF has very much made me who I am today. I mentioned this above, but I got bullied a lot and got called an alien because of my tumors and plexiform. And I also got called a cow very often because of all my spots and café au lait spots. I’ve been told that it looks gross. Ive been called an alien. I’ve been told I’m damaged. I’ve been told I makes others feel uneasy. I’ve been asked whats wrong with me. I’ve been asked if I’m contagious. I hated how I looked for so long and hated how my very visible plexiform looked especially as it grew. The pain was also very, very bad but I learned over the course of many years that enduring the pain just made me stronger and more resilient and it gave me a strength that many people don’t get to know. And to me that became something that was so special to me. That I got to be stronger.
I also began to use this condition as a way to use my voice to raise awareness and to help inspire people who are also suffering from this condition or other conditions or other issues where they feel like they don’t belong. Learning that I’m strong and resilient was something I became so proud of. And it gave me a perspective that if I can overcome everything I have, then I can overcome anything. Also, as I got older, I realized more and more that I am so much more than how I look and the pain I suffer from. It’s just one part of me. There are so many other parts of me that are so special too. Reminding myself that the people who love me and accept me and want to be in my life are my people. And the ones who make fun of me or don’t like me because of how I look are not my people and they do not deserve to be in my life.
I am a strength and conditioning coach, and I work in advertising, and also as a personal trainer. I love what I do at both jobs. But, I am most passionate about coaching and helping people realize the strength they didn’t know they had. I love my family and friends and they are so so important to me. I also love to cook and garden and enjoy learning and staying active and busy in whatever ways I can!
Also, I was recently featured on a PODCAST in which I spoke about living with NF, the challenges I’ve faced, and how I have overcome them. I feel as if this shines a light on NF and I hope gives hope to those living with NF.
Favorite Song
I don’t think I have one song but I love elm and deep/tropical house music as well as country.
Dream Superpower
Freeze time or go back in time
Favorite Food
Gnocchi!
