image by: HWN

HWN Suggests

Taking a Bite Out of Charcot-Marie-Tooth Disease

The disease named for the three physicians who identified it in 1886 doesn’t affect the brain or spinal cord, just the peripheral nerves, causing muscle weakness and atrophy in all of the limbs. It can result in foot deformities, loss of hand or feet muscle, foot or lower leg weakness, or numbness, tingling, or burning sensations in hands and feet. At present, there is no known cure, although CMT is rarely fatal. Physical and occupational therapy, orthopedic devices, and pain medications can help mitigate the risk of injury from falls or disease progression.

read full article

Featured

 Understanding Charcot-Marie-Tooth Disease (CMT)

CMT is the #1 most commonly inherited peripheral neuropathy in the world, There are over 140 genetic mutations associated with what is now diagnosed as CMT. This progressive peripheral neuropathy is usually inherited, however, it can also occur spontaneously as a “de-novo” mutation.

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.

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.

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 Is CMT Disease?

Charcot-Marie-Tooth disease, or CMT, is a progressive, degenerative disease involving the peripheral nerves that branch out from the brain and spinal cord to other parts of the body, including the arms, hands, legs and feet. CMT was discovered in 1886 by doctors — Jean-Martin Charcot, Pierre Marie, and Howard Henry Tooth— for whom the disorder was named. Typically, the brain and nerves are constantly communicating with each other. But with CMT, the motor nerves (the nerves that control our muscles) and sensory nerves (the nerves that carry sensory information like pain and temperature to the brain) don’t work properly. They have trouble sending signals to and from the brain. This results in numbness, sensory loss, muscle weakness/atrophy and nerve degeneration. Over time, the muscles weaken and deteriorate.

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.

“Triumph over Charcot-Marie-Tooth (CMT): One Family’s Journey of Courage and Hope”

Our journey with the Charcot-Marie-Tooth Association (CMTA) began in 2001, soon after my 7-year-old son, Yohan, was diagnosed with CMT 1A. Known as a heritable peripheral neuropathy, CMT is a genetic disease usually passed down from generation to generation. Still, no one in our past or present families showed symptoms or had been diagnosed with progressive neuromuscular disease.

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.

CMT Research Foundation

Investing in innovative research to find treatments and cures for Charcot-Marie-Tooth disease.

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.

CMT Mobility Rescue

Ken Cornell, CO. (Certified Orthotist), created CMT Mobility Rescue to help CMT patients reclaim the ability to move freely, restoring their confidence through predictable, consistent mobility tools and techniques.

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.

Physiopedia

CMT was first described and named after Jean-Martin Charcot, Pierre Marie, and Howard Henry Tooth in 1886. CMT usually emerges during the first two decades of life, characterized by a gradual onset of weakness beginning in the lower extremities and eventually affecting the upper extremities.