Physios urged to help charity in finding ‘missing 20,000’ people with CMT

It is estimated that around 23,000 people have CMT, making it the most common inherited neurological condition. However, the support charity CMT UK only knows of 3,000 and believes many people are undiagnosed due to lack of awareness among non-specialist health professionals.

CMT is not life-threatening, but is steadily progressive and can cause deformities in the lower legs, feet and hands that significantly impact on quality of life.

Karen Butcher, CMT UK’s chief operating officer, said: ‘People with undiagnosed CMT may be seen by a physiotherapist and we would really like them to be aware of the condition so patients can get a quicker diagnosis if the GP has missed it.’

Ms Butcher, who has the condition, added: ‘Physios should look out for patients with a change in shape of the foot, such as a high arch or flat foot or hammer or claw toes, muscle wasting in the lower legs with a classic inverted bottle-shape appearance.

‘Patients may also mention other classic signs such as clumsiness, pain, balance problems leading to unsteadiness, trips and falls and chronic fatigue.’

Moderate exercise is beneficial

Physios also have an important role to play in helping patients to manage the condition, Ms Butcher added.

‘It is crucial that people get the right advice early on,’ she said. ‘When I was a kid, the advice was not to exercise for fear the condition would progress faster – so there is a whole generation of CMT couch potatoes. Now the advice is that moderate exercise can delay progression, so a good physio can really help patients to manage their long-term fitness.’

Ms Butcher urged physios who come across people with CMT to put them in touch with CMT UK so the charity can increase its support.