Charcot-Marie-Tooth disease (CMT) is a lifelong, progressive disorder, and presents daily challenges that tend to become more difficult as the patient ages. Living with CMT means learning to adapt, continuously adjusting to changing limitations.
Although people with CMT have a normal life expectancy and the degree of disability varies widely, in most cases CMT affects every area of life. The disease itself is physical, but it can also present social and emotional challenges.
The most obvious impact of CMT is its effect on a person’s physical abilities. The nerve damage not only weakens muscles but can also cause spasms, cramps, and pain. Weak muscles make walking difficult. Disabilities range from problems with clumsiness and balance to needing support from a cane, walker, or wheelchair, to remaining mobile. Any action that requires significant upper or lower body strength can be a challenge, and it may be very difficult or impossible to stoop, squat, kneel, or climb.
Weak muscles in the legs and feet also cause foot deformities, such as foot drop, unusually high arches, and hammertoes. If arms and hands are affected, grasping handles, zipping or buttoning clothing, and even brushing teeth or hair may be a challenge. Finally, CMT can cause more general problems such as numbness, burning, itching, and overall fatigue.
The physical challenges can limit a person’s ability to perform activities at home and in the workplace. Fortunately, the American with Disabilities Act (ADA) requires employers to accommodate disabilities and provide job protection for people with disabilities. Changing jobs, working part-time, or working remotely may also be an option. Many people living with CMT live active, fulfilling lives, and are able to pursue educational and career goals.
Managing Physical Challenges
Tools are available to help meet the physical challenges that CMT brings. Generally, it is important to exercise daily and follow a healthy diet. Healthcare providers can work with patients to develop an exercise program that is appropriate for their limitations. Stretching daily can help loosen muscles and improve flexibility.
Devices that make grasping and turning easier, such as zipper pullers, adaptive handles, and a long-handled grabber, can help patients maintain independence with self-care. Braces, canes, walking poles, and walkers can help support mobility. Some people may need wheelchairs or scooters only in special situations, although some may need them most of the day.
Social and emotional challenges
A study of 80 people living with CMT found that depression is common in those with the condition. Living with CMT can be discouraging, frustrating, and overwhelming, and may lead to sadness, loneliness, anger, and fear. It may also lead to guilt as patients may feel like others are having to work more because they are unable to.
Having physical limitations often means patients are unable to participate in social activities, which can lead to feeling isolated. Co-workers may mistake a disability for laziness. Children may be embarrassed by clumsiness or by wearing devices such as braces or special shoes, and may have difficulty making friends.
Managing social and emotional challenges
Support from family, friends, or professional counselors can provide encouragement, understanding, and practical help that can lessen feelings of depression, loneliness, or isolation. People are often more accepting when they understand what CMT is and how it affects the patient’s life, especially since very few people have ever heard of the disease, so educating classmates or workmates may open doors for friendships.
Connecting with others who have CMT can also be a powerful source of emotional and social encouragement. There are many online support groups such as the emotional support group of the CMT Association and the CMT support group and discussion community of Hereditary Neuropathy Foundation. Support groups provide a forum for sharing information, advice, and success stories with others facing the daily challenges of CMT.
Note: Charcot-Marie-Tooth News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.