CMT and Me - a Column by Jill Price

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Can Charcot-Marie-Tooth Affect Breathing?

I have days when I cannot catch my breath. I may not be exercising or doing something strenuous when this happens. It can happen after walking around a store or loading the dishwasher. Could shortness of breath be another symptom of Charcot-Marie-Tooth disease (CMT)? According to research, CMT can…

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Celebrities with CMT Help to Raise Awareness

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…

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What I Learned Over the Last Decade

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…

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It’s OK to Have a Bad Day Now and Then

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:…

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A Good Boot Is Hard to Find

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…

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Weighing in on Weighted Blankets

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…

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Does CMT Inheritance Pattern Make Male Symptoms Worse?

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.

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Me-ow! Can My Cat’s Purr Help with CMT Joint and Muscle Pain?

My sweet cat, Shadow, hasn’t left my side in days. I have been experiencing increased joint and muscle pain due to my Charcot-Marie-Tooth (CMT) and changes in the weather, particularly the colder temperatures. Sometimes, I think that Shadow knows when I’m feeling unwell. Though Shadow can’t understand why I’m…

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CMT and Bone Density Loss: Is There a Connection?

Ugh! I twisted my arm, and now I need to see a specialist. Several years ago, I fell off my bike and dislocated my right elbow, and I still have issues with it. The other day, I went to pick something up and twisted my arm the wrong way. Now…

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Things That Make Me Go ‘Hmmm’

Listening to the song “Things That Make You Go Hmmm” by C+c Music Factory got my wheels turning. There are times when I wonder what in the world people are thinking. I have Charcot-Marie-Tooth (CMT) and mobility issues. That means I use a cane at times and have a…