I was very active as a child and young adult. I played baseball, lacrosse, and football in high school and football in college. It wasn’t until my late 30’s that I began to experience numbness in my feet. I went to see a neurologist for an EMG where they first suspected CMT. In 2015 at the age of 52, I had a genetic assessment done and it was confirmed that I have CMT1b.
My condition worsened when I contracted the flu and spent 3 weeks in bed. I could no longer run like I was used to and took to cycling. After doctors told me that I would be limited to what I could do physically, I decided to enter a sprint triathlon. Since then, I’ve participated in 4 triathlons and numerous cycling events. My goal is to continue to exercise and strengthen the muscles that can.
In 2018 I participated in a clinical trial for Acceleron’s ACE-083 drug. It was a great experience, and I felt the drug improved the muscle mass and strength in my legs. At the conclusion of the trial, it was determined that there wasn’t enough of an improvement in the patients to move forward with the drug. I’d do it again if the opportunity presented itself.
I have 3 sons in their 30’s and none of them show any signs of CMT!