I wish I didn’t have CMT, but I would not be who I am without it.

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.

5 thoughts on “I wish I didn’t have CMT, but I would not be who I am without it.”

  1. Hi, Karen
    I love your spirit and attitude! Cmt doesn’t define me either. I was 46 when I discovered I have it, and I am now 64. I recently got the genetic testing done, and type 2. My husband is very supportive of me, and like you, I am very independent. I intend to stay as independent as I can as long as I can and do as much I can. Though I know my limits more now, and will “take it easy” and rest when necessary and not push myself too much. Anyway, keep up the wonderful support of this crazy disease we share.
    All the best.
    Linda

  2. It’s great to hear your story and I am very grateful for your fundraising, but I think it isn’t the norm for most of us cmters. You mentioned nothing of the pain or the inability to breath deeply, the awful choking that makes you think you are going to die right there! You choke on food, you choke on water, you choke on your own saliva!
    Im 56 and climbed no mountains, I can hardly put one foot in front of the other. I can’t hold my grandchildrens hands because mine are so gnarled.
    I have CMT and I wish I didn’t.

    1. Love and feel your pain bc like you have done none of the things she has done but I’m happy for her. I’m CMT1X and like you I have a lot of problems with this disease and my life too, so I think she’s an exception not the norm but a lot of doctors think we are all a like😕I thank her and all others who do anything to help others know of this disease.

  3. I am currently recovering from a really bad fall and a subsequent hip injury. I think we share the same grit and determination this time at fifty five years old I am thinking I need to be a bit more careful and look after myself by maybe using a wheelchair more often to preserve the mobility I have !

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