This guide to orthotic devices for people with Charcot-Marie-Tooth (CMT) disease has been a dream of mine for a long time. I was diagnosed with CMT1A at the tender age of 18 months, but didn’t learn about orthotic devices for CMT until 2007, when I started a support group in Atlanta. Up to that point, I thought ankle foot orthoses (AFOs) were for the aged and infirm—something that, at age 35, I didn’t think I was.
When orthotist Sean McKale, CO, LO, came to my support group meeting, he immediately recognized in me the walk of someone with CMT. When Sean, who sits on the CMT Association (CMTA) Advisory Board, shared this with me, I was shocked. I had no difficulty walking—or so I thought! However, I listened closely as he talked about the benefits of in-shoe foot orthoses to correct alignment and prevent joint deterioration. My mother had just had a double knee replacement, necessitated by poor alignment caused by her CMT. OK, I thought, maybe I could use foot orthoses to prevent that type of joint deterioration.
As Sean went on to detail the benefits of AFOs, especially the dynamic AFOs, I got progressively more excited. Did I want to fall less? Yes. Did I want more energy throughout my day? Yes! Did I want to stop or reduce my joint pain, especially in my knees, hips, and back? YES! OK, Sean, I thought, I’ll try a pair of AFOs.
That was my aha! moment. The AFOs felt like very lightweight, stable boots with springs in the heels. They looked like shin guards, the kind used in soccer. They could be easily camouflaged under pants, with the right shoes. Yes, I thought, maybe I could use these from time to time.
Six years later, I wear them about 50% of the time. I love to hike in the woods, where my AFOs prevent trips and falls. I love to travel, and my AFOs prevent fatigue from long walks and rolling my ankles on cobblestones. Overall, my AFOs allow me to walk farther, longer, and to have less pain and more energy at the end of an arduous day. I can do the things I love to do!
I have not become dependent upon my AFOs. I don’t wear them when I know I won’t walk far or when I would prefer to wear shorts or a dress. I don’t wear them to exercise on the bicycle or treadmill, where I can hold on for balance. I have learned when I can go without them and when I can’t. I have worked hard to maintain strength and muscle tone in my legs. My AFOs supplement my leg strength rather than replacing it, vastly improving my quality of life.
This guide is aimed at helping others to reach their aha! moments faster than I did.
Together with Lower Extremity Review and the extensive input of CMTA Advisory Board members Sean McKale and David Misener, CPO, we hope this publication will empower patients with CMT and practitioners to discuss different types of orthotic devices and make an informed decision about which type will be the best fit.
The CMTA’s vision is a world without CMT. We will achieve this vision through our extensive and focused drug development research initiative, STAR (Strategy to Accelerate Research). We know that we will soon be successful in finding treatments to slow, stop, and reverse the progression of CMT.
Until then, we believe it is our responsibility to provide resources to people living with CMT about treatments that can improve quality of life, and, when indicated, those include in-shoe foot orthoses and AFOs.
I encourage you to visit our website, cmtausa.org, for research updates, educational resources, to connect with others in the CMT community, or to invest in our vision of a world without CMT by making a donation. And please feel free to call us at 800/606-2682 or email us at firstname.lastname@example.org.
Wishing you the best of health,
Director of Development