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Growing up with Charcot-Marie-Tooth disease, I had no idea that other people — including celebrities — might have it. I rarely heard of a celebrity with a disability when I was young. These days, famous people with chronic illnesses and disabilities are much more visible. I recently learned that…

For many years, my childhood bedroom featured a photo of Mr. McFeely, the friendly mailman from the beloved children’s television series “Mister Rogers’ Neighborhood.” It was as a souvenir from a meet and greet my family attended. While…

It’s hard to believe that we are in a new decade. I have grown and changed so much in the last 10 years. Looking back, I am amazed at how far I have come. A decade ago, I wasn’t so open about my Charcot-Marie-Tooth (CMT). I told some people close…

Meeting a new neurologist is always an adventure. My son and I recently had our annual appointments at the Johns Hopkins Charcot-Marie-Tooth (CMT) Center in Baltimore. Our appointments were with a new neurologist because ours left the center for a new job opportunity. I had the usual assessments:…

For the past few weeks, I’ve been studying sequences of hand movements and letter combinations. For example, U, R, U’, L’, U, R’, U’, L was one combination I had trouble with. As were F, U, R, U’, R’, F’ and R’, D’, R, D, U. If these…

Winter brings cold, wet weather. That means it’s time to begin the search for winter boots. I dread shoe shopping, and I probably dread boot shopping even more. Because of my Charcot-Marie-Tooth disease (CMT), it is difficult to find boots that fit my needs. They have to be extra wide…

The North Carolina Museum of Art has a few paintings by Andrew Wyeth. One of them is “Weather Side,” which depicts a side of the house where Christina Olson lived. Olson…

Sleep issues are not uncommon for Charcot-Marie-Tooth (CMT) patients: obstructive sleep apnea and restless leg syndrome have been associated with CMT1. Fatigue is my most frustrating symptom, so I have tried many strategies to help me sleep better. A few friends recommended that I try a weighted…

Until recently, I never took anything written by art critics personally. But a few weeks ago I started reading criticism of Andrew Wyeth’s painting “Christina’s World.” With each critique, it was as if I were looking…

Someone asked whether males are more severely affected by Charcot-Marie-Tooth (CMT). I thought about how this seems to be true in my family. I have CMT type 1A, as do my father, son, uncle, sister, brother, nephews, nieces, and cousin. We think my paternal grandfather had CMT, but was undiagnosed.