Recently, my father sent me a copy of doctor’s notes he received in 1989. Those familiar with Charcot-Marie-Tooth disease (CMT) would recognize many of the phrases scattered throughout: “chronic weakness in lower extremities” and “increasing grip weakness,” to name a couple. It was when he first learned he had CMT, all the way in his 40s.
I don’t remember the exact moment I first heard the phrase Charcot-Marie-Tooth. Looking back into the hazy archives of my childhood memory, I remember the sound and smell of a buzzsaw as it sent vibrations through my leg while cutting through the mold used to create my first pair of ankle-foot orthoses (AFOs). And I remember the collection of soccer socks I had, though I never played the sport. The cuffs were always loose and warped because I would pull the socks up to my knees and then fold the cuffs over the tops of my AFOs to prevent them from falling throughout the day.
But even then, I had those five syllables — Charcot-Marie-Tooth — as shorthand for a collection of symptoms and experiences.
My awkward gait, lack of finger dexterity, and occasional fatigue weren’t mysteries to me like they were for my father during his childhood. Until he received a proper diagnosis, my father had just always assumed he had a clubfoot, which led to an ultimately unnecessary surgery when he was 8.
While growing up, I don’t think I ever really appreciated the blessing of knowing my condition’s name. Honestly, I’m ashamed to say that my knowledge of CMT is quite basic despite that early diagnosis.
In the past, when curious friends asked what it’s like to have CMT, I would say that my mild type of the disorder is kind of like genetic clumsiness, then I’d try to move the conversation along to other topics. I never delved too deeply into CMT’s technical aspects.
As I approach the age of 30, I feel as if I’m just beginning to understand that to embrace myself I should learn more about what makes me who I am, and that includes learning more about my CMT.
I am not at all saying that CMT defines me. Never once have I thought that.
However, I do believe that a greater understanding of my CMT can help me take control and assist me in overcoming some of the struggles the disorder throws at me.
There is much I just don’t know.
When exactly did I learn about CMT? What did my friends think about my AFOs beyond simple curiosity? How did my parents and physicians explain CMT to me? What was the trigger that caused my parents to get me my first AFOs? Why did my father not have AFOs prior to me getting them? How has CMT affected my siblings? And how should I plan for my future with CMT?
I hope to explore some of these questions and perhaps find a connection to the CMT community — outside of my family, I’ve never met anyone else who has the disorder. I’m excited to find out more and share with you those revelations. Perhaps I’ll learn more about myself along the way, too.
Note: Charcot-Marie-Tooth News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Charcot-Marie-Tooth News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Charcot-Marie-Tooth.