Stories of NF: Kevin C.

I was diagnosed with Neurofibromatosis Type 1 in the fall of 1992 at the age of 7. I don’t remember the day I was diagnosed. I remember a follow-up appointment about 15 months later in early winter 1994, at the age of 8, at the NF Clinic at Children’s Hospital Colorado. I knew why I was going to this specialist and what I had. So the exact age would have been probably around seven or eight years old.

I’ve had migraine headaches since I can remember, long before the diagnosis. These have become less frequent as I’ve gotten older and less severe as well. Just over five years ago I fractured my hip and was diagnosed with early onset osteoporosis and a vitamin D deficiency. Though I was never really into downhill skiing or snowboarding like most Coloradoans, this has eliminated that as an option.

My family is a great support system, and I am successful on my own. I have participated in Cupid’s Undie Run for the last six years in Denver; 2020 will be my seventh year and over the last six years have raised over $35,000 for the Children’s Tumor Foundation. One of the amazing experiences I’ve been able to have because I’ve had NF was attending NF Camp in Utah and Arizona from 1999-2003. It is one of my favorite memories from my teenage years.

I don’t let NF limit me. I have great friends, travel, work full time, enjoy the great outdoors that Colorado has to offer, own a townhome and live on my own. I graduated with two bachelor degrees in Economics and Psychology on time in 2008, graduating Cum Laude.

Having NF makes me struggle with the decision if I want to have kids. I’ve had and continue to have issues with fine motor skills, my handwriting is awful, I am eternally grateful for computers and email. I also struggle with some visual spatial things, I’m not a great chess player, but I can read a map, navigate in a new city, and drive myself everywhere.

It took many years for me to incorporate NF as part of my identity, growing up and even into the early years of college it was not something I really wanted nor did I openly share about it until I truly trusted people. I now view it as a part of my identity, but it does not define me. I wrote my college essay on my experiences growing up with NF. I still wish I had a copy, but I can remember how I finished the essay: But different, d-i-f-f-e-r-e-n-t, 9 letters do not define me or my future. Fighting NF has made me stronger by realizing it doesn’t limit me or define me. I know I can do almost anything I set my mind to.