Stay up to date with notifications from The Independent

Notifications can be managed in browser preferences.

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.

Jane Kirby
Tuesday 15 February 2022 08:40 GMT
A new study suggests thousands more people may have muscular dystrophy than previously thought (PA)
A new study suggests thousands more people may have muscular dystrophy than previously thought (PA) (PA Wire)

Your support helps us to tell the story

From reproductive rights to climate change to Big Tech, The Independent is on the ground when the story is developing. Whether it's investigating the financials of Elon Musk's pro-Trump PAC or producing our latest documentary, 'The A Word', which shines a light on the American women fighting for reproductive rights, we know how important it is to parse out the facts from the messaging.

At such a critical moment in US history, we need reporters on the ground. Your donation allows us to keep sending journalists to speak to both sides of the story.

The Independent is trusted by Americans across the entire political spectrum. And unlike many other quality news outlets, we choose not to lock Americans out of our reporting and analysis with paywalls. We believe quality journalism should be available to everyone, paid for by those who can afford it.

Your support makes all the difference.

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.

The NHS and the social care system must be enabled to meet the needs of a growing and an ageing neuromuscular population

Catherine Woodhead, Muscular Dystrophy UK

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.

Thank you for registering

Please refresh the page or navigate to another page on the site to be automatically logged inPlease refresh your browser to be logged in