About CMT and this Blog
— Jean Martin-Charcot
Symptoms are in reality nothing but a cry from suffering organs.
— Kylie McPherson
Being able to walk pain-free is a blessing. Being able to walk without showing the pain is a skill.
Charcot-Marie-Tooth (CMT) Disease is the most common inherited form of peripheral neuropathy, affecting almost 1 in 1,500 people. Despite its prevalence, CMT is not well-known outside of a few research hubs in the United States and Europe compared to other types of progressive neuromuscular atrophy.
There are many different types and subtypes of CMT that express themselves rather differently. A simple description of CMT that fits the most common cases is that it’s the progressive degradation and loss of motor nerves in the upper and lower extremities. Nerve signals are delayed or lost in part or entirely, with the feet and toes, hands, and fingers most affected. Muscle tissue weakens and dies, bones may develop improperly, and over time the stress this shifts to other parts of the body (e.g., knees, hips, and spine) commonly leads to a number of additional problems. New research indicates respiration, pulmonary, and even cognitive functions can also be impaired to varying degrees with some forms of CMT.
The impact on mobility and its progression over time varies from person to person and type to type. Some rare forms of CMT are terminal, life threatening, or shorten one’s life expectancy. Most CMT cases do not decrease life expectancy, but they all impact quality of life adversely. The psychological and social impact of one’s CMT experience is frequently challenging, especially if positive supports are lacking.
If CMT is new to you, this video from Muscular Dystrophy UK makes a good introduction. Holly Waters describes what it was like to grow up in the United States with a moderately severe case of CMT in the 1970s and 1980s. In Canada, the Russell family describes their multi-generational experience with CMT. 📺
While genetic research since the 1990s has revolutionized the diagnosis of CMT, and promising new paths to cures and therapies have begun to emerge since the late 2000s, CMT still goes undiagnosed in many individuals and families. Finding the best ways to deal with its physical, emotional, and social/relationship effects can be a daunting and lonely process, especially when resources and support are lacking.
This Isn’t a Private Blog. Anyone can Join!
Would you like to blog with us here? You can! Please get in touch through the Contact page or reach out in one of the CMT Facebook groups.
I never knew “what was wrong with me” until I was 40, but thanks to medical advances and people with CMT sharing photos of their legs and feet on social media, I started down the path of diagnosis and more informed coping relatively recently.
Now, thanks to the good people at Automattic and Knock Knock WHOIS There (KKWT)’s dotblogger program, I started this blog at WordPress.com to share my questions, stories, and the things I am learning along the way.
I’m especially interested in promoting CMT awareness and connecting with people in Canada. 🇨🇦 Outside of southern Ontario, I’ve found little support and knowledge about CMT, even among doctors, physiotherapists, and orthotists. I would love to help start a local CMT support group in Edmonton, Alberta similar to the Calgary Neuropathy Association, which has some really great people you should look up if you’re in that area. Edmonton is where I live now, after passing through NY, NJ, NC, WI, and IA among other parts beyond.
Wherever you are, if you find yourself or a family member dealing with CMT alone or with many unknowns, please join in with any questions, comments, or feedback you may have. 💬
🤗 👉 If you work with WordPress and deal with chronic illness, pain, and/or fatigue in your life, check out WP&UP and their Slack channel for #spoonies. 🥄🥄🥄
Got a question or story to share?
I’d like to hear it!
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