On Wednesday 7th September, Carmarthenshire County Council illuminated County Hall in Red for ‘World Duchenne Awareness Day’.
Llanelli Resident Mandy Edwards got in touch with County Councillor Sean Rees who requested for the Council to follow the national campaign across the U.K. and light up a landmark to raise awareness.
Children born with Duchenne Muscular Dystrophy cannot produce dystrophin, a protein vital for muscle strength and function. About 2,500 boys and young men are known to be living with the condition in the U.K at any one time, although much rarer the condition can also affect girls. Life expectancy for the disease now averages out at just 26 years old.
Daniel Edwards, from Llanelli was diagnosed in 2009 at 2 months old, his mum Mandy Edwards recently joined a Welsh Muscle wasting Mums group.
Mandy admits she initially found the diagnosis very difficult to deal with and was grateful for the support of family, friends and colleagues. Being invited into the Mums group provided a great source of knowledge and support and as a whole they want to raise awareness of Duchenne and all associated muscle wasting conditions.
“I contacted the Council and they have been really supportive. They have asked for links to charities and information pages about it so they can put them up on their website and social media as well as lighting up County Hall.
“If we can educate just one person about DMD, raise awareness and reduce social stigmas facing disabilities then the awareness day has been a success.
Sean Rees, County Councillor for Glanymor Ward added:
“My thanks to the Council Leader Darren Price for his approval and support in lighting up County Hall.
“Although Duchenne Muscular Dystrophy was first described more than 150 years ago, not many people are aware of the impact of this disease on the lives of individuals, their carers and families.
“More awareness among a wider audience would help to avoid a delay in diagnosis, a better understanding and an improvement of care and support offered within our communities.”
You can access further information via; musculardystrophyuk.org, actionduchenne.org and duchenneuk.org who all offer information, support and fundraising ideas.