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I Can’t Walk, but I Can Talk - CMT simplified

With apologies to Drs. Charcot, Marie and Tooth, the name is awful. No one knows what it means, it’s cumbersome to spell and it suggests a dental issue. And the acronym? Try googling “CMT” – you have to get to the third page before you get something other than country music.

This is CMT in a nutshell

• Charcot-Marie-Tooth is named after 3 neurologists who first described the disease in the 1880’s.
• It is a hereditary neuropathy.
• Neuropathy means that there is a problem with the peripheral nerves.
• What are peripheral nerves? Your brain and spinal cord make up the central nervous system. Everything outside of this is…

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Featured

 Stories About Disability Don’t Have to Be Sad

While in most other ways I’m just your typical eighth grader, I also happen to have been born with Charcot-Marie-Tooth, a form of muscular dystrophy. Charcot-Marie-Tooth is a degenerative nerve disease that causes muscles in my arms and legs to atrophy over time.

Articles of Interest

Alan Jackson Reveals He Has A Nerve Condition Affecting His Balance

Country superstar Alan Jackson revealed in an interview Tuesday that he has a degenerative nerve condition that affects his balance but he intends to keep performing. Jackson, 62, said in an interview aired on NBC's "Today" show that he was diagnosed with Charcot-Marie-Tooth disease a decade ago. He said it was a genetic condition and its effects on his ability to walk have been getting more noticeable. The condition does not alter his life expectancy, he said.

How an Extreme Athlete Uncovered Her Own Genetic Flaw

After four days of tests, Kim’s neurologist told her that she had Charcot–Marie–Tooth disease, a genetic disorder that affects the peripheral neurons carrying signals between the spinal cord and the extremities. It’s rare and carries a varying suite of symptoms, but Kim’s are typical, starting at the feet and heading upward.

Letting go of my secret about Charcot-Marie-Tooth, “the biggest disease no one has heard of”

When I opened up about my story, I thought I was letting go, but I was actually just finding a different way to manage my feelings. The outpouring of support I received gave me the confidence and empowerment to get even more involved in raising awareness and money for “the biggest disease no one has ever heard of.”

The Voices of Charcot-Marie-Tooth

People with the neurological disorder called Charcot-Marie-Tooth must contend not only with pain and muscle weakness but also the frustration of having a disease with a funny-sounding name that most people have never heard of.

What’s Wrong With Me?

After a neurologist ruled out MS, MD, Lyme disease, and spinal stenosis, I researched my symptoms online again and asked to be tested for CMT1A. The Athena diagnostics genetic test proved positive. I finally had a diagnosis. Charcot-Marie-Tooth (CMT), a degenerative neuromuscular disorder, robs people of normal function of their arms, legs, hands & feet. Rarely, like in my case, CMT can affect your voice and breathing as well. Although millions world-wide, 1 out of 2,500 have CMT, most have never heard of it.

Resources

Charcot-Marie-Tooth Association

Our mission … to support the development of new drugs to treat CMT, to improve the quality of life for people with CMT, and, ultimately, to find a cure.

CMT and Me

In a world that too often says “no” to life, hope is the decision to say “yes, dammit, yes” – and then to live accordingly.” I say “yes” to whatever life, and that includes CMT, has to throw at me. Yes.

Julianna Yuri

Julianna is our five-year-old daughter. She has a severe neuromuscular disease called Charcot-Marie-Tooth (CMT). Her body is not strong enough for this world, but her mind, heart and spirit are perfect. She teaches us how to be joyful in the face of a cruel disease. Our life with Julianna has been heartbreaking, humbling, funny and sweet. There have been plenty of tears, but more laughter. We hope to show the many sides of life with a medically fragile child.

Living Well with CMT (Charcot-Marie-Tooth) Disorder

Meeting the challenges of a rare neuromuscular disorder.

This is my journey...

My life with CMT and trying to deal with constant chronic pain with a positive attitude.

Hereditary Neuropathy Foundation

Hereditary Neuropathy Foundation (HNF) is a non-profit 501(c)3 organization which mission is to increase awareness and accurate diagnosis of Charcot-Marie-Tooth (CMT) and related inherited neuropathies, support patients and families with critical information to improve quality of life, and fund research that will lead to treatments and cures.

MedlinePlus

CMT affects your peripheral nerves. Peripheral nerves carry movement and sensation signals between the brain and spinal cord and the rest of the body. Symptoms usually start around the teen years. Foot problems such as high arches or hammertoes can be early symptoms. As CMT progresses, your lower legs may weaken. Later, your hands may also become weak.

National Institute of Neurological Disorders and Stroke

Charcot-Marie-Tooth disease (CMT) is one of the most common inherited neurological disorders, affecting approximately 1 in 2,500 people in the United States. The disease is named for the three physicians who first identified it in 1886 - Jean-Martin Charcot and Pierre Marie in Paris, France, and Howard Henry Tooth in Cambridge, England. CMT, also known as hereditary motor and sensory neuropathy (HMSN) or peroneal muscular atrophy, comprises a group of disorders that affect peripheral nerves.