Seeing red to help combat stigmas of condition
CARMARTHENSHIRE Council has illuminated County Hall in red for World Duchenne Awareness Day.
Llanelli mum Mandy Edwards got in touch with county councillor Sean Rees who requested for the local authority to follow the national campaign across the UK and light up a landmark – such as the council headquarters in Carmarthen – to raise awareness.
Children born with Duchenne muscular dystrophy (DMD) 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 UK 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.
Mandy’s son Daniel was diagnosed in 2009 at two months old, and Mandy recently joined a Welsh muscle-wasting mums group.
She 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.
Mandy said: “I contacted the council and they have been really supportive, asking 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.”
Cllr Rees, county councillor for Llanelli’s Glanymor Ward said: “My thanks to the council leader Cllr 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.”
For more information on the condition visit musculardystrophyuk. org actionduchenne.org and duchenneuk.org which all offer information, support and fundraising ideas.