How to Best Support Someone Living with Charcot-Marie-Tooth Disease

Charcot-Marie-Tooth Disease (CMT) is a common inherited neurodegenerative disorder. It typically involves the loss of muscle tissue in the feet, calves, and other areas of the legs. In about half of all cases, CMT also affects the hands and arms to some extent. The nerves that connect your brain to your muscles (motor-nerve) and the outer covering of your nerves (myelin sheath) are damaged. Their loss leads to decreased strength, sensation, and slower reflexes when you use them. Although it’s not possible to cure CMT, some treatments can help manage many of its symptoms, like surgery and therapy.

1. Learn about the Disease

It is important to have a general understanding of CMT and the symptoms it can cause. This will help you better understand what your loved one is experiencing and provide empathy and support. You can find information about CMT online, from support groups, or a neurologist.

2. Help Them Stay Active

Physical activity is important for everyone, but it’s especially important for people with CMT. Exercise helps maintain muscle strength and function, prevents joint pain and stiffness, and boosts mood and energy levels. A physical therapist can help your loved ones develop an exercise routine that is safe and effective for them.

3. Assist with Daily Activities

The loss of muscle tissue and strength in your loved one’s feet, legs, and arms can make it challenging for them to complete simple daily tasks like dressing and bathing. It may be necessary to help with these activities at first while your friend or family member adjusts to the changes they’re experiencing. Depending on the severity of their CMT, asking for help may be unnecessary in the long run.

4. Help to Avoid Injuries

CMT makes your loved one more susceptible to falls, leading to serious injury or disability later in life. If your partner or a family member has CMT-related pain, it’s best to try and avoid strenuous activities until their symptoms are under control. Talk to their doctor about any activities they should avoid.

5. Be a Listening Ear

Living with a chronic illness can be difficult, both physically and emotionally. It’s important to provide your loved ones with a listening ear and support when they need it. Offer to go with them to appointments, help them manage their symptoms, or just chat about their day. Let them know that you are there for them, no matter what.

6. Encourage and Give Them Hope

Sometimes people with chronic illness tend to despair. They get complacent, overwhelmed with the disease. Encourage them to open up about their feelings and focus on achievable goals for each day. They must realize that life goes on even while dealing with chronic pain or illness.

7. Be Patient

Living with CMT is different for everyone, so there’s no one right way to support someone with the disease. Be patient and flexible, and give your loved one time to adjust. They may need more encouragement or assistance at first while getting used to their symptoms. And remember that if you’re stressed out about supporting someone with CMT, it will only make things worse for them. If you also have CMT, be sure to ask your loved ones for help. They want to be there for you and will likely be happy to do whatever they can to make things easier.



Alex is the co-author of 100 Greatest Plays, 100 Greatest Cricketers, 100 Greatest Films and 100 Greatest Moments. He has written for a wide variety of publications including The Observer, The Sunday Times, The Daily Mail, The Guardian and The Telegraph.

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