03/09/2024
On the lead up to International Duchenne Awareness Day on the 7th September, please feel free to share this post.
Every year, on 7th September, the world comes together to observe World Duchenne Awareness Day. This significant day serves as a reminder of the challenges faced by individuals and families affected by this rare genetic disorder. It is a debilitating condition that primarily affects young boys, gradually robbing them of their ability to move, play, and live life to the fullest.
DMD is usually diagnosed in early childhood, often around the ages of 3 to 5 years. Parents and carers may notice delayed developmental milestones, difficulty walking, frequent falls, and muscle weakness in their child. Every year, around 100 boys in the UK are born with DMD.
Over time, the condition worsens; around the age of 12, those living with the condition will very likely lose the ability to walk unaided and will have to use a wheelchair. By their late teens, most young people with Duchenne lose the ability to move their arms and experience more problems with breathing and with the heart.
Children, young people and adults with DMD often require surgery under general anaesthetic at some point in their life. Particular operations could include muscle biopsies, foot surgery, insertion of a feeding tube or spinal surgery to correct spinal curvature caused by scoliosis.
As well as being full-time carers, families affected by DMD are often at the forefront of advocacy efforts, working tirelessly to increase public understanding, improve access to resources, and drive research initiatives.
Early signs:
Poor head control
Difficulty getting up from the floor
Waddling gait
Difficulty walking as far or as fast as other children
Frequent falls
Clumsiness, especially when running
Using hands to get up from sitting or squatting
Leg pain
Learning problems
Enlarged calves
Always here to support any family who reaches out.
