What is Duchenne and what are the needs of adults?

Duchenne is a rare muscle-wasting condition, which starts in early childhood and sees progressive muscle loss over time. Most children start using a wheelchair at ages 9-13 and by their late 20s experience almost total paralysis, reliance on a ventilator to breathe and a need for round-the-clock-care.

Duchenne Muscular Dystrophy is a genetic muscle-wasting condition which starts in early childhood and sees progressive muscle loss over time. It affects 1 in 3500 births, predominantly males although females can sometimes be affected too. Most children start using a wheelchair at ages 9-13 and as they get older continue to lose strength and the ability to do everyday tasks without help.  Life expectancy can range dramatically from early teenage years to mid-50s.

Due to advances in medical care in most countries adults with Duchenne are now often living with  into their 30’s, 40’s, and 50s with extensive health, care and social needs. Later stages of Duchenne see adults experiencing total paralysis, reliance on a ventilator to breathe and a need for round-the-clock-care.

There are an estimated 650 people in the UK aged over 18 with Duchenne and many more with Duchenne-like conditions. DMD Pathfinders was set up by adults with Duchenne themselves to meet the needs of teenagers and adults living with the condition.

“We are an unforeseen generation, since we were not expected to still be alive and as a consequence organisations and agencies that were originally created to advise and support our parents/carers have been slow to respond to our needs. We need peer support, information and advice to enable us to live longer, happier and independent lives”. DMD Pathfinders Trustees.