Patients having a lifelong, progressive disorder face many challenges, and these challenges tend to get more difficult as they age. Some lifelong conditions, like Charcot-Marie-Tooth disease, don’t really shorten life span and let you live independently. However, they can significantly decrease your quality of life.
The physical side is only one piece of it. It’s followed by emotional strain and social changes that develop over time. For people living with Charcot-Marie-Tooth disease (CMT), learning to adapt to it becomes part of everyday life. This guide will delve into some ways of coping with symptoms of CMT.
What is Charcot-Marie-Tooth Disorder?
Charcot-Marie-Tooth disease is a genetic condition, which means people usually inherit it from one or both of their parents. This condition affects the peripheral nerves responsible for movement and sensation in the arms and legs. Since it’s genetic, it progresses slowly over time instead of appearing all at once.
The peripheral nervous system that CMT affects includes all the nerves outside the brain and spinal cord. For a lot of people, the first signs appear early in life, sometimes in childhood or the teen years, and then become more noticeable as time goes on. The condition involves a mix of muscle weakness and sensory changes, making it harder to move the legs, feet, and ankles, and can also reduce feeling in the feet.
Over time, this can make it hard for you to walk, causing frequent ankle sprains, hammertoes, and muscle weakness or shrinkage in the lower legs.
Managing Life with Charcot-Marie-Tooth Disease
Managing Charcot-Marie-Tooth disease isn’t about fixing the condition, but about how to work around it. As it’s not curable, care focuses on limiting how much the symptoms interfere with daily life, increasing mobility, and reducing discomfort. Some ways to cope with it are:
Everyday Care
Many people with CMT rely on non-drug support to maintain independence and quality of life. These approaches focus on movement, balance, and ways you can make your body work better.
- Physiotherapy helps keep muscles active, improves balance, and you’ll fall less often if you stick with it.
- Occupational therapy is important for performing and managing daily tasks at home or at work.
- Ankle or hand braces (orthoses) give you stability and support to make your hand movements and walking more controlled.
- Custom foot orthotics help manage high arches or foot pain, improving comfort and balance throughout the day.
- Orthopedic surgery may be considered in more severe cases, particularly when foot or joint deformities interfere with mobility or cause ongoing pain.
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Ongoing Medical Care and Emotional Support
There are different doctors and specialists involved, each addressing a particular part of the condition. Having a team makes it easier to deal with not just the physical pain but also the emotional ups and downs that come with it. Some professionals involved in handling this condition are:
- A neurologist who monitors how the condition is progressing and helps guide overall care.
- A rehabilitation specialist makes sure that physical therapy, occupational therapy, and supportive devices are all coordinated with each other.
- A pain specialist may step in if chronic pain becomes an issue.
- A psychologist or psychiatrist can help individuals and families cope with the emotional side of living with a long-term condition.
Endnote
Managing CMT is a mix of rehab, supportive devices, regular check-ups, and also looking after your medical health. Since these diseases can’t be cured, it all comes down to how they are managed and how to minimize the symptoms so you can maintain the quality of your life.