If you or a loved one has just been diagnosed with Charcot-Marie-Tooth disease (CMT), you may be feeling overwhelmed and frightened. You may have a million questions and no idea where to find the answers. This guide is meant to help patients and families cope with a new CMT diagnosis.
What is CMT?
Charcot-Marie-Tooth disease is a group of progressive neurological disorders that cause muscle weakness and wasting. The disease gets its name from the three doctors who first described it in 1886: Jean-Martin Charcot, Pierre Marie, and Howard Henry Tooth.
CMT is caused by damage to the peripheral nerves, which are the nerves that connect the brain and spinal cord to the muscles and skin. This damage can lead to loss of sensation in the extremities, muscle weakness, and deformities such as high foot arches or hammertoes. CMT is hereditary, meaning it is passed down through families. It affects both men and women equally.
There are many different types of CMT, and the symptoms can range from mild to severe. Some people with CMT may only experience a loss of sensation in their hands and feet, while others may have more severe muscle weakness that leads to difficulty walking or using their hands.
Managing CMT Symptoms
CMT is currently incurable, but there are treatments available that can help patients manage their symptoms. There is no one-size-fits-all approach to treatment as each patient’s needs will be different. Treatment plans are designed by specialists, including neurologists, physical therapists, and orthopedists. Common treatments for CMT include physical therapy, occupational therapy, splinting, and orthopedic surgery.
Exercise can help reduce muscle wasting and weakness, and it also helps improve circulation. Physical therapy can also help maintain muscle strength and function.
Caring for Someone with CMT
If you or a loved one has been diagnosed with CMT, it is vital to seek support. Many CMT organizations and resources are available to help patients and families cope with the disease. It’s important to support groups to connect to and resources to help you learn more about caring for someone with CMT.
If you are caring for someone with CMT, you can do a few things to help them manage their symptoms. First, help them stay as active as possible. Exercise is essential for people with CMT, even if it is just a short walk around the block. You can also help by doing household chores and errands to make their lives a little easier.
It is also essential to be patient and understanding. Caring for someone with a chronic illness can be challenging, and you may need to take a break from time to time. Seek out support from other caregivers, either in person or online.
Living with CMT can be challenging, but you are not alone. Many people out there understand what you are going through and can offer support and guidance. You can learn to manage your symptoms and live a whole and satisfying life with the right resources.