More people live with muscular dystrophy than previously thought – study

More than 110,000 people in the UK are thought to have muscle-wasting conditions.

15 February 2022

There are over 40,000 more people living with muscle-wasting conditions in the UK than previously thought, according to a new study.

Until now, experts believed more than 70,000 people had muscular dystrophy, but new research suggests this figure is actually over 110,000.

It also found that people seem to be living longer with muscular dystrophy than previous studies have suggested.

There are many different types of muscular dystrophy, which represent a group of inherited genetic conditions that gradually cause the muscles to weaken.

Muscular dystrophy is a progressive condition and cannot be cured, which means it gets worse over time and leads to worsening disability.

Some types eventually affect the heart or the muscles used for breathing, at which point the condition becomes life-threatening.

Dr Iain Carey, from St George’s University of London, used millions of GP healthcare records from across the UK for the new analysis, covering 2000 to 2019.

He said the new study, funded by Muscular Dystrophy UK, had suggested that the conditions are becoming more common as people live longer.

“Indeed, a rise in prevalence among older age groups suggests that some of these conditions are now much more common within an ageing population,” he said.

“It is therefore important that multidisciplinary health and social teams are made aware of this new estimate as soon as possible.”

Muscular Dystrophy UK said the finding was important for funding decisions and shows the condition is as common as others such as multiple sclerosis and Parkinson’s disease.

Catherine Woodhead, chief executive of Muscular Dystrophy UK, said: “No wonder neuromuscular specialist services are so stretched.

“They already work tirelessly to meet the complex needs of people with muscle-wasting conditions, and this research shows clearly that they need further resources. This growing population needs support, and they cannot be left behind.

“The Government’s own Rare Diseases Framework acknowledges that living with a rare disease like a muscle-wasting condition can have a huge impact on education, financial stability, mobility and mental health.

“The NHS and the social care system must be enabled to meet the needs of a growing and an ageing neuromuscular population that requires a lifetime of multidisciplinary support.”

The new study was published in the journal PLOS ONE.

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