Coping Methods For Charcot Marie Tooth Disease

Charcot Marie Tooth disease (CMT), named for the three physicians who first identified it, is a generic term for a number of genetic disorders that include peripheral nerves, the motor, and sensory pathways, the signals from the spinal cord and brain. The condition may affect the entire body. Type 1 Charcot Marie Tooth affects the protective covering that insulates nerves, the so-called myelin sheath, while type 2 Charcot Marie Tooth actually affects the fibers of the nerves or the axons. Type 3 Charcot Marie Tooth is the most severe form of Charcot Marie Tooth disease and is better known as Dejerine-Sottas disease.1

In the US alone, there are more than 100,000 people affected by some form of the condition.

Coping Methods For Charcot Marie Tooth Disease

Some practices can deter complications from Charcot Marie Tooth disease and assist you to overcome their impacts. Activities at home may offer relief and support when early therapy and coping methods are adopted and regularly followed:

Stretching: Stretching will assist in strengthening as well as retaining your joint motions to a large extent and will decrease injury risk. It will increase your coordination, balance, and flexibility. It will also minimize the chances of deformities in the joints.

Regular Exercise: The muscles and bones remain strong when you exercise regularly. For weak joints and muscles, exercises of low-impact, for instance, swimming and biking, are much less stressful and effective. Exercise will enhance your coordination and balance of the bones and muscles, thereby minimizing the likelihood of falls.

Stability Improvement: Weakness in muscles related to this disorder can make your feet unstable, leading to falls and severe injuries. You can improve stability by taking a cane while walking. Ensure adequate lighting to prevent stumbles and falls.

The Importance Of Foot Care: Regular care of your feet is essential to aid in relieving the symptoms and deter complications due to numbness, loss of feelings and deformities of the foot:

Foot Inspection: Check your feet regularly for the presence of infections, wounds, ulcers, or calluses. Take additional care for your nails. It is vital to cut them properly as bent nails (often happens with the patients with Charcot-Marie-Tooth disease) may damage foot nerves causing loss of sensation. They may also hinder circulation in your feet.

Wearing The Right Shoes: Use protective shoes that are correctly fitted. Think about wearing high-top and ankle support shoes. In case of deformities in your foot, like a hammertoe, try to have a custom-designed shoe.

Taking Help Of Support Groups: Support groups can be useful in coping with this disorder along with the right guidance of a physician. You will be able to meet other individuals suffering from the same condition and can share common issues.3,4

Charcot Marie Tooth most commonly affects the lower legs and feet, but over time can begin to affect the hands. The onset of symptoms of a Charcot-Marie-Tooth disease is gradual, with symptom presentation often appearing in early adulthood.2 In fact, many people may have a mild form of the disease but never know. General Type 1 Charcot Marie Tooth, which affects the myelin, is noticed earlier than Type 2 or 3, and may even become apparent in childhood. Fortunately, except in rare cases, people with Charcot Marie Tooth are not expected to have a shortened life expectancy.

Management Of Charcot Marie Tooth Disease

There is no known cure for Charcot Marie Tooth disease. Instead, the goal is to reduce the symptoms and increase the quality of life of the affected person.

Condition management may include physiotherapy to help strengthen muscles and prevent progression of the disease. Occupational therapy can help identify areas that are becoming difficult for patients and provide solutions, such as walking aids.

In some cases, surgery may be necessary to correct the deformity of the feet that prevents a person from walking and moving independently. Pharmacotherapy may also be indicated for managing nociceptive or neuropathic pain.

It is important that affected people have a strong support network that they can rely on in dealing with difficulties associated with Charcot Marie Tooth disease. As it is a continual and gradual state, many people may find it difficult to stay positive and are to deal with mental health issues.1,3

Conclusion

Most patients with Charcot Marie Tooth have a normal life expectancy, but the quality of life can be significantly influenced, especially as the disease progresses. As there is no cure for the disease, symptomatic treatment of the disease and management through coping methods and physical therapy are the primary options.

References:  

  1. Grandis M, Shy ME. Current therapy for Charcot-Marie-Tooth disease. Current treatment options in neurology. 2005;7(1):23-31.
  2. Pfeiffer G, Wicklein E, Ratusinski T, Schmitt L, Kunze K. Disability and quality of life in Charcot-Marie-Tooth disease type 1. Journal of Neurology, Neurosurgery & Psychiatry. 2001;70(4):548-550.
  3. McCorquodale D, Pucillo EM, Johnson NE. Management of Charcot–Marie–Tooth disease: improving long-term care with a multidisciplinary approach. Journal of multidisciplinary healthcare. 2016;9:7.
  4. Vinci P, Gargiulo P, Panunzi M, Baldini L. Psychological distress in patients with Charcot-Marie-Tooth disease. European journal of physical and rehabilitation medicine. 2009;45(3):385-389.

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