About Charcot-Marie-Tooth (CMT)
My Explanation
Growing up, I was told I had a muscle disease called Charcot-Marie-Tooth disease (CMT). Over the years, as medical research has advanced, it has become more commonly classified as a hereditary peripheral neuropathy.
CMT is a group of inherited genetic disorders that damage the peripheral nerves—the nerves responsible for carrying messages between the brain, spinal cord, and the rest of the body. As these nerves become damaged, muscles gradually weaken and shrink, sensation is lost, and balance and coordination become increasingly difficult.
For me, CMT affects nearly every part of daily life. It impacts my balance, hand strength, mobility, and endurance. Although it is a progressive disease, I have always tried to focus on what I can do rather than what I can’t.
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My Family’s Story
As far as our family knows, CMT has been passed down through several generations.
Orville Kennedy (my maternal grandfather) was one of ten children, and five of them had CMT.
My mother, Elaine Kennedy, was one of four children and was the only one affected.
I am one of three sisters, and I am the only one who inherited the disease.
Thankfully, my children did not inherit CMT, which means it will not continue through my family’s line.
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What Is Charcot-Marie-Tooth Disease?
Charcot-Marie-Tooth disease is named after the three physicians who first described the condition in 1886: Jean-Martin Charcot, Pierre Marie, and Howard Henry Tooth.
Today, CMT is recognized as one of the most common inherited neurological disorders, although it is still considered a rare disease. It affects the peripheral nerves that control movement and sensation throughout the body.
Because CMT is progressive, symptoms typically worsen over time and may include:
Muscle weakness and muscle loss (atrophy)
Loss of sensation
Balance and coordination problems
Difficulty walking
Hand weakness and loss of grip strength
Fatigue
Foot deformities such as high arches or hammertoes
Chronic pain
Every person with CMT experiences the disease differently, but for many of us, simple daily tasks become increasingly challenging as time goes on.
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How CMT Affects Me
My greatest challenge is my balance.
Walking is often easier for me than standing still. When I’m standing, I almost always need something to lean against for support. Uneven surfaces, such as grass or gravel, make balancing even more difficult.
CMT has also affected my hands. As my grip strength continues to decline, picking up everyday objects becomes harder. This is one of the many reasons I am training Tank to become my mobility service dog.
Living with CMT has taught me patience, perseverance, and the importance of accepting help when it’s needed.
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Types of Pain Associated with CMT
People with CMT often experience several different kinds of pain, including:
Neuropathic pain
Burning, tingling, numbness, or electric shock-like sensations, most commonly in the feet, lower legs, and hands.
Musculoskeletal pain
Aching in the feet, ankles, knees, hips, or lower back caused by muscle weakness, changes in posture, and joint stress.
Muscle cramps
Painful muscle spasms that often occur in weakened muscles.
Loss of sensation
Ironically, even while experiencing chronic pain, some areas may lose the ability to feel touch or temperature, increasing the risk of unnoticed injuries.
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Information on this page is based on my personal experience living with CMT, along with educational resources provided by the Charcot-Marie-Tooth Association (CMTA).