My CMT Story 

Gary Donaldson

Community Manager

[email protected]

“I have no intention of living with CMT for the rest of my life”

By Gary Donaldson 

When I was growing up, my mom’s uncle came to stay with us several times a year. His balance wasn’t good, and his hands and feet didn’t look like anyone else’s I knew. I remember that he always had to lean on a kitchen counter or door frame to stand up. My parents and extended family members talked about something called CMT in our family tree. But as a young kid, I was much more interested in going outside to play. Even though I’d started walking on the tips of my toes, a genetic test at age 10 came back negative for CMT, so I never really thought about it again.

Little did I know just how much those three letters and my uncle’s experience would have on my life.

Throughout my teens and early 20s, I was slower at running than others my age. I couldn’t really jump. I noticed that my right big toe was shorter than the one on my left and looked “squashed.” I struggled to walk on sand. Regular trips to my family doctor were often met with a dismissal of anxiety — “take these pain killers and you’ll feel better about things tomorrow.”

I spent nearly 20 years with a lower self-esteem and self-doubt. In 2015, at age 29, I’d had enough. I spent the next three years going from doctor to doctor and pouring over medical journals to understand what was wrong with me and why my body was continuing to change. I was told I had anxiety. I was told I was wasting medical professionals’ time. I vividly remember one physician telling me that if I had multiple sclerosis (which I was convinced I had for a while thanks to Google searches), “they couldn’t do anything anyway, so why would you want to know?”

Every day felt like a nightmare I couldn’t escape from. I was mentally and physically exhausted and felt incredibly alone. I didn’t want to worry my family, so I hid a lot of what I was going through.

Finally, I found a neurologist who suspected I had CMT. At age 32, an EMG confirmed that I had CMT — CMT1X due to my family history. That genetic test all those years ago had been wrong.

I remember standing at the train station after receiving my diagnosis just sobbing — not because I had CMT; because I’d had to fight so long for the medical world to believe that something was wrong with my body.

While I processed my anger and emotions, I ultimately knew I had two choices: I could accept that I had CMT and that my body would continue to deteriorate or I could fight this thing head on with everything I’ve got. I promised myself that I would fight and use my skills and abilities to find a cure for my family and me.

Since then, I’ve sought out the best researchers in the field and have learned as much about them and their work as I can. I’ve attended international conferences. I found the CMT Research Foundation, which shares my belief that people with CMT have waited too long for answers and that we must find treatments and cures now.

Today, I’m working with the CMT Research Foundation as the social media and community manager to connect with those living with CMT and help tell and elevate our story so that we can raise more funds to invest in research that will lead to treatments during our lifetime.

My body continues to deteriorate every year. CMT is physically and mentally horrible. But I have no intention of living with CMT forever. I’m determined to be part of the solution and help make CMT a distant memory in my family’s past and for everyone else with this condition. While the lack of control I have over my own body terrifies me, I will never accept that it will always be part of me. I’m proud to work with the CMT Research Foundation because they identify the most promising research, the best researchers and bring them together so that we can make real progress. That’s what we need, and we can’t wait any longer.

To connect directly with Gary and learn how you can join him in being part of the solution to end CMT, email him at [email protected].