True Stories about Living with Charcot-Marie-Tooth (CMT) And Other Relevant, but Unrelated Tales
My son Yohan was diagnosed with CMT at 7 years old. We have no prior history of CMT in our families. Yohan has CMT due to a new spontaneous genetic mutation. He’s the first in our family to have CMT. Though Yohan’s CMT has thrown roadblocks and presented challenges in his life, it’s also made […]
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By Sara Kevern* Q: I have gained a lot of weight since March after the start of the shelter in place, and continued to gain throughout the year due to COVID restrictions, stress, etc. Is CMT making this worse? What can I do about it? A: First of all, you’re not alone! This is one […]
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By Mike Driedger As someone living with CMT, I’ve found that living in a city — in my case, Toronto — has made living a healthy and active lifestyle easy. Of course, urban living might not work for you. But I’d like to share with you how I owe much of my health, mobility, and […]
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The training wheels came off my own bike so long ago; I’d forgotten the emotions, challenges and vulnerable feelings of trying to balance on two wheels for a few pedal strokes without crashing to the ground. In fact, I had always taken riding a bike for granted until my 5 year-old son, Yohan, attempted to […]
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I have an ulcer on my foot that will not heal. Is this typical of CMT? Dr. Joseph Gregory Stilwell, DPM writes: Yes,ulcers can be quite common with CMT. Oftentimes because a bone is prominent, and taking excess pressure- irritation occurs. Then, with decreased sensation and other changes in the skin along with possible diminished […]
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1) Charcot-Marie-Tooth Disease (CMT) is also known as: a. Inflammatory Nerve and Muscle Syndrome b. Hereditary Motor and Sensory Neuropathy c. Funky Foot Disorder d. Chronic Tendinopathy with fatigue 2) How many different inheritance patterns does CMT have? a. 1 b. 2 c. 3 d. Too many to count. 3) Can CMT skip generations? a.Yes […]
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OUR STORY – Yohan and I had so much fun trail riding when we were younger. Oh, the stories we could tell!! I’ll never forget the time I stepped in a bee’s nest and ran for my life with Yohan on my back! He held on to my mane and stayed on. Phew! Close call! […]
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by Mitch Warner, CPO The Helios® orthosis is a custom made energy storing carbon fiber AFO. The Helios® provides balance, stability, and a more natural gait pattern. Utilizing triplanar control*, dynamic response*, and floor reaction*, these corrective forces stabilize the foot and ankle to give standing and walking stability that is necessary for normal walking that […]
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James Lea It was in the winter of 2012 that we met the elderly man sitting in a bulky hospital-style wheelchair, covered from shoulder to toe with a plush blanket. Jeana Sweeney and I had flown to Seattle, WA to speak at a local CMTA branch meeting. We had just begun the presentation when a […]
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Top Twelve Reasons I’m Talking About CMT during Awareness Month 12) Confused Faces-When I tell people my son has Charcot-Marie-Tooth disease, I get looks like this: Let’s stop the nonsense. I’m looking for reactions of recognition, like Dr. House’s below: 11) Dentures? Besides having had too many cavities, crowns, and pulled teeth, there is […]
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ARE YOU READY? The Cycle (and Walk!) 4 CMT event at the Old Lantern in Charlotte, VT on Sunday, August 26 will be upon us before you know it! Please act now to reserve your spot to cycle, walk and/or attend the unforgettable after-party! Whether you are attending the event […]
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“What’s up with the knee brace?” I asked 12-year-old Rylee, who was visiting from Pennsylvania for a couple of days. Head down, in a whisper, she told me, “My knee keeps popping out of joint. It hurts really bad when that happens. ” Just the thought of having my patella on the side of my […]
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