Understanding the prevalence of falls in myotonic dystrophy

Published Date
Jenny Sharpe

A new research study using data from the UK myotonic dystrophy patient registry has been published. The registry is funded by Muscular Dystrophy UK and the Myotonic Dystrophy Support Group.

The study investigated the prevalence of falls and fractures in people with myotonic dystrophy living in the UK, Netherlands and Germany.

Falls are a concern for people with muscle wasting conditions, as they can cause fractures that reduce mobility. This can lead to even weaker muscles and potentially a permanent loss of ambulation (the ability to walk). Some people also develop a ‘fear of falling’, which may make them less active and generally less healthy.

To understand how often people with myotonic dystrophy fall and fracture bones, researchers from the OPTIMISTIC project sent out surveys via the UK, Dutch and German patient registries.

In total, 573 people completed the survey. 70% reported having a fall in the last year and 17% had falls that resulted in a fracture. The most common reported causes for falling were weakness in the legs and impaired balance.

When the researchers compared these results with those of a healthy population, they found that middle-aged people with myotonic dystrophy had a higher risk of falling than healthy people aged over 65. This suggests that people with myotonic dystrophy ‘prematurely age’ in that they are more at risk of falling earlier in life.

These findings will help to raise awareness of falls amongst healthcare professionals. This will hopefully encourage them to record patients’ falls history, provide advice on fall prevention, and refer patients to special ‘falls clinics’, if appropriate. This will ultimately help to improve the care of people with myotonic dystrophy.

Dr Cecilia Jimenez Moreno, first author of the study, said:

As a physiotherapist, I am aware that we are increasingly recommending a more active lifestyle for patients with myotonic dystrophy. However, we must not underestimate these patients’ risk levels to fall and should adjust our advice accordingly to ensure that patients feel safe while moving more.

The study was published in the scientific journal, Neuromuscular Disorders.

Further information

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