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New research reveals 110,000 people in the UK now live with muscle-wasting conditions

15 February 2022

Tens of thousands more people in the UK than previously thought are living with rare, muscle-wasting conditions. Research we’ve funded puts the figure at about 110,000, compared with the earlier figure of 70,000.  

These findings come at an important time when decisions are being made about the future of health service commissioning and delivery. The new figure puts the number of people living with muscle-wasting conditions on a par with more well-known conditions, such as multiple sclerosis and Parkinson’s disease, and we’ll use these findings to fight for better healthcare for our community. 

The methods used for the new study are different from those used before, so you can’t directly compare the two figures. But the new results do suggest an increase in life expectancy among those living with muscle-wasting conditions.   

Dr Iain Carey led the study at St George’s University of London. He and his team used millions of healthcare records collected from GPs UK-wide, between 2000 and 2019, and the findings have been published in the journal PLOS ONE.

Dr Carey said:

“We’re grateful to MDUK for funding our research, which has revealed a far greater number of people living with neuromuscular conditions than previously estimated. Indeed, a rise in prevalence among older age groups suggests that some of these conditions are now much more common within an ageing population. It is therefore important that multidisciplinary health and social teams are made aware of this new estimate as soon as possible.”

“It’s so important that the information from this new study is shared with treatment commissioners, and that they use it to inform healthcare services. So many people living with muscle-wasting conditions face years of uncertainty and misdiagnosis and treatment commissioners need to take neuromuscular conditions as seriously as other, more well-known diseases,” said Bryan Gould, who has oculopharyngeal muscular dystrophy (OPMD).”

Our CEO, Catherine Woodhead, believes decision-makers should engage with these findings as a matter of priority:

“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 are often overlooked. 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 needs a lifetime of multidisciplinary support.”

The news also comes after the publication of the charity’s Shining a Light reports, which highlight how the impact of COVID-19 has exacerbated historic issues around the paucity of neuromuscular service provision. These reports offer recommendations on how care can be improved, and MDUK is engaging with health services across the four nations, as well as the Department of Health and Social Care, to influence how neuromuscular services are provided.  

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