As with many families, I am but one leaf in a family tree colored by CMT1A across its many limbs and branches. I have watched successive generations struggle with the disease’s progressively debilitating physical symptoms and persistent emotional toll: grandparents, parents, aunts, uncles, siblings, children. This disease deeply affects those who have it, but just as deeply affects everyone in their circle: their spouses, loved ones, caregivers, and friends who see CMT up close and do everything they can to prevent sufferers from feeling defined by this disease and help them rise above it.
For me personally, CMT doesn’t define me but it has been a defining element shaping my life. While the social stigma from the constant tripping and falling and injuries fades as a person reaches adulthood, and I still gamely laugh along while others who don’t know me chuckle that I am “accident-prone,” as I get older and the disease progresses, the consequences of falls and injuries become increasingly serious. Both my father’s and brother’s lives were cut short by complications from CMT and CMT-related injuries, and we all are still reeling from the loss. My children will never know their grandfather’s vivid storytelling; my brother’s children will never know his sly humor and booming laugh; all of us miss their professional brilliance.
My own child and my brother’s child both have CMT. They are still very young, but I am already grieving for the difficulties they will face if we do not find a way to stop this disease in its tracks. I want our family tree’s newest branches to shed hues of CMT and grow brighter and stronger, unmarked by the pain of this disease.