Hi! I’m Karen, and I have CMT 1A. I grew up in northern West Virginia and have since lived in North Carolina, California, Arkansas, and now Arizona. My husband Chris and I have been married 10 years, and we have a 7-year- old son, Emmett. We also have two dogs (Milo and Daisy Jane), and lots of fish.
I was diagnosed on my 25th birthday. (Happy birthday to me, right?). I went in to NCV testing believing I had Carpal Tunnel Syndrome, and came out with CMT. It was a hard day. My neurologist was young and inexperienced: he told me I had CMT, handed me a brochure, and left the room. I went out to my car in shock, and wept. When I got home, I wrote a letter to my family, explaining what I knew. My brother, who had internet in 1986, printed out the entire CMTA website and mailed it to me. The CMTA was my life raft in the early years of my diagnosis.
Since my diagnosis, we’ve pieced together that our family’s CMT came from my maternal grandfather. One of his two children (my mom) got the gene, as did two of her four. My son (the only child between the two of us who are affected) at this time does not appear to have CMT. He has, however worn braces or custom insoles for 5 of his 7 years, due to significant pronation. His neurologist doesn’t think it’s CMT, but only time will tell. If he does, I know how to help him, and he knows from watching me that life is still whatever we make of it. I’ve been to 41 states and 12 countries. I’ve hiked up mountains and completed triathlons, completed grad school and worked most of the last 30 years, I volunteer actively and am a mom.
My husband knew I had CMT before we started dating, chose to be with me anyway, and helps me in the ways I need without compromising my fierce independence—he makes me stronger. When I want to do things that CMT makes difficult, I think about modifications: what’s my goal, and what do I need to do differently so I can achieve it? There’s no one right way to do things. I don’t measure myself against others; there’s no point. Instead, I listen to my body and do all I can. My CMT gives me great determination. I wish I didn’t have CMT, but I would not be who I am without it, and I like who I am.
Now I’m 46, and the CMTA is my charity of choice. Because I can’t write $1,000 checks myself, I find creative ways to give back to the CMTA and our cause: I’ve completed two fundraiser triathlons; donated 100% of my small business sales for two weeks; written pieces for the CMTA website, newsletter, and a book; and next month I’m heading off to Camp Footprint as a counselor. I’m at peace with my own CMT, but I wish that kids didn’t have to struggle with it; growing up is hard enough without physical challenges. I dream of a world without CMT, and I’m doing all I can to be a positive force in our community.