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Physios urged to help charity find CMT sufferers

Thursday 6th September 2018
Physiotherapists have been urged to help find thousands of undiagnosed sufferers of a rare condition that affects the lower limbs.
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Physiotherapists have been urged to help a charity find the estimated 20,000 undiagnosed sufferers of the rare neurological disorder Charcot-Marie-Tooth (CMT), which causes progressive deformity in the feet and lower limbs.

The charity CMT UK has revealed only 3,000 people have been diagnosed with the condition in Britain, but it estimates 20,000 more unknowingly have the disease, and physiotherapists treating patients with lower limb problems will be among the best-placed people to identify sufferers. 

Due to its rarity, the condition often goes undiagnosed and while not life-threatening, it can have a significant impact on the quality of life for patients. 

CMT UK’s chief operating officer Karen Butcher told the Chartered Society of Physiotherapy website: "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 had the condition herself, added that the signs physiotherapists should look for include changes to the shape of their feet, including a high arch or flat foot with hammer or claw toes. Another sign is muscle wastage in the lower legs. 

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

Moderate exercise can help ease the symptoms, she noted, making it important for sufferers to get physiotherapy. 

Ms Butcher revealed that the need for exercise has only become known as understanding of the condition has increased, and that when she was diagnosed as a child she was given the opposite advice, on the assumption that exercising would accelerate the condition. 

September is Charcot-Marie-Tooth Awareness Month, with the campaign also targeting a wider increase in public awareness of the condition. Indeed, many GPs and other medical professionals do not even know about the condition. 

Last year's campaign was supported by singer Cheryl Tweedy, whose son has been diagnosed with CMT.

Written by Matthew Horton

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