Charcot-Marie-Tooth Disease (CMT) Care Staff Guide: Inherited Neuropathy

Charcot-Marie-Tooth disease, often shortened to CMT, is a group of inherited conditions that damage the peripheral nerves, the nerves outside the brain and spinal cord. These nerves control muscles and carry touch sensation from the limbs to the brain. CMT is lifelong and progressive, but it is not life-threatening. With the right support, many people stay active and independent for many years. Care staff can help by understanding how the condition affects movement and feeling, protecting against falls and foot problems, and respecting each person's wishes about their care.

This guide draws on NHS information about CMT and explains what it means for day-to-day care. It does not replace advice from the person's GP, neurologist or multidisciplinary team.

What is Charcot-Marie-Tooth disease?

The NHS explains that CMT is also known as hereditary motor and sensory neuropathy (HMSN) or peroneal muscular atrophy (PMA). It is caused by an inherited fault in one of many genes involved in the development of the peripheral nerves, leading to nerve damage over time. A child may inherit the fault from one or both parents, and the chance of passing CMT on depends on the specific genetic faults each parent carries. The NHS notes that the condition is not life-threatening and that most people have the same life expectancy as those without it, although it can make daily activities difficult and can have a significant emotional impact.

Symptoms

According to the NHS, symptoms include:

• muscle weakness in the feet, ankles, legs and hands
• an unusual way of walking
• very high arched feet or very flat feet
• numbness in the feet, arms and hands

Symptoms usually appear between the ages of 5 and 15, though they sometimes begin in middle age or later. CMT is progressive, so symptoms gradually worsen and everyday tasks can become harder over time. People living with CMT in later life may have had the condition for decades, or may have had it undiagnosed. Reduced sensation in the feet and hands can be easy to overlook, which is why attentive care matters. Our guide to peripheral neuropathy explains how nerve damage affects sensation and safety more generally.

Diagnosis

The NHS advises seeing a GP if you have symptoms. If CMT is suspected, the GP refers the person to a neurologist for tests to confirm it. People with a family history of CMT who are thinking of having a baby can ask their GP about genetic counselling.

Treatment and management

There is no cure, but the NHS says therapies can reduce symptoms and support independence. Care is usually delivered by a multidisciplinary team, and regular reassessment is needed because CMT tends to progress. The NHS describes these main elements:

• Physiotherapy: considered one of the most important therapies. It can help symptoms and reduce the risk of muscle contractures. Options include strengthening, aerobic exercise such as walking or swimming, and posture and balance work. Exercise should follow a personalised plan.
• Occupational therapy: helps with everyday tasks affected by arm and hand weakness, such as dressing or writing, often using adaptive aids.
• Orthoses, footwear and walking aids: insoles, custom-made supportive shoes, ankle or leg braces and thumb splints. The NHS says wheelchairs may be used occasionally for rest, as losing the ability to walk completely is unusual.
• Pain management: NSAIDs such as ibuprofen for joint and muscle pain, and tricyclic antidepressants or anticonvulsants for nerve pain.
• Surgery: where deformities are significant, options include procedures on the feet and, for scoliosis, spinal surgery.

Medicines that need care

The NHS notes that some medicines can damage nerves, and that the charity Charcot-Marie-Tooth UK publishes a list of them. The multidisciplinary team can advise on personal risk. If a person with CMT is prescribed a new medicine, particularly in hospital or by a new prescriber, make sure the prescriber and pharmacist know about the diagnosis. Our guide to polypharmacy and deprescribing explains how regular medicines reviews help keep prescribing safe.

Day-to-day support for care staff

• Prevent falls. Weak ankles and foot drop can cause trips. Make sure walkways are clear, lighting is good and footwear is supportive and well fitting. Our guide to falls prevention equipment and footwear offers practical ideas.
• Look after feet. The NHS advises checking and cleaning feet regularly. Report sores, blisters, pressure marks or colour changes promptly, because reduced sensation means injuries may go unnoticed.
• Support independence. Offer adaptive aids for dressing, eating and writing, but let the person do as much as they can.
• Encourage personalised exercise. Follow the physiotherapist's plan and report pain or unusual fatigue.
• Follow healthy habits. The NHS suggests maintaining a healthy weight, limiting alcohol and avoiding caffeine and nicotine if tremors are present.
• Notice emotional impact. Living with a progressive condition can be hard. The NHS says support groups and talking therapies such as CBT may help, and CMT UK is the main UK charity and support group.

Training and professional development

Understanding rarer conditions helps you tailor support to the individual. Keep a CPD record of what you learn and how you use it, and explore our CPD resources for care staff for more.

Frequently asked questions

Is CMT the same as muscular dystrophy or motor neurone disease?

No. CMT is an inherited condition of the peripheral nerves. It is not life-threatening, according to the NHS.

Can someone with CMT still exercise?

Yes. The NHS says physiotherapy is one of the most important therapies, with a personalised exercise plan.

Do people with CMT need extra care with medicines?

Possibly. The NHS says some medicines can damage nerves, so prescribers and pharmacists should know about the diagnosis.

This article draws on NHS Charcot-Marie-Tooth disease pages (last reviewed October 2022), so check for the latest NHS guidance.