The most common type of muscular dystrophy, which mainly affects boys, is a ‘forgotten condition' in this country, a charity has claimed.

According to Muscular Dystrophy Ireland (MDI), the Government must do more to support those affected by Duchenne muscular dystrophy.

There are around 30 types of the neuromuscular condition, muscular dystrophy. Duchenne is the most common and most severe type. It affects around one in every 3,500 male births and usually boys with the condition lose their ability to walk between the ages of 10 and 14. By their late teens, they tend to lose strength in their upper bodies, including their arms.

The progressive muscle weakness associated with this condition also leads to other serious health issues, such as heart and lung problems.

"For too long, Duchenne muscular dystrophy has been the forgotten condition. It is so insidious that its creeps up on boys who are initially able to walk and do all the fun things that other boys do, to then slowly but relentlessly take their mobility away as they enter their teenage years. It leaves them confined to a wheelchair in their teens when other young people are experiencing all that life has to offer," explained MDI chief executive, Joe Mooney.

However, a new treatment - Translarna - has the potential ‘to keep some young boys with Duchenne on their feet for longer', Mr Mooney said.

Translarna has received conditional approval from the European Medicines Agency for certain Duchenne patients whose condition is caused by a specific genetic defect. This marks the first treatment that addresses the underlying genetic cause of Duchenne. It slows the progression of the condition in children aged five years and older who are able to walk.

It is available in some European countries, but not in Ireland, so MDI is calling on the Government to approve its use here.

"We now have the first new therapy that has the potential to keep some young boys with Duchenne on their feet for longer. It would also make them eligible for other subsequent treatments that require them to be mobile. There shouldn't need to be a discussion about this. We need the Government to take this issue seriously, and to approve its use for the small number of people who need it and to do so now," Mr Mooney said.

He acknowledged that this treatment would be expensive, but insisted that a price cannot be put on someone's quality of life.

Meanwhile, MDI also called on the Government to increase investment in research and improve access to clinical trials.

"There is currently no centre for research or facility for clinical trials in Ireland and it is ridiculous that we have a situation now where people with muscular dystrophy here are having to travel to the UK, with all the extra burden that entails, to access the latest therapies and treatments. We cannot go on sitting idly by while our boys and young men continue to be cheated out of life," Mr Mooney insisted.

The charity did however highlight a major positive move for people with Duchenne muscular dystrophy. This year marks the first time that a medical clinic specifically for young adults with this condition will be available.

Located in Dublin's Beaumont Hospital, this new combined clinic, which is provided in partnership with MDI, means that adults will be able to access a range of services, including neurology and respiratory care, under one roof.

MDI highlighted these issues to coincide with World Duchenne Awareness Day (September 7).

For more information on muscular dystrophy and MDI, click here