What is Duchenne Muscular Dystrophy?
Duchenne Muscular Dystrophy (or DMD for short) is a condition that makes the muscles in a person’s body weaker over time.
Our muscles are what help us move, run, jump, and even do small things like smiling or hugging.
In people with DMD, their muscles don’t work as well because their bodies are missing an important piece called dystrophin.
Dystrophin is like a tiny helper that keeps muscles strong, and without it, muscles can get damaged and stop working properly.
Who does DMD Affect?
DMD is very rare, but mainly affects boys like me. Every year 1 male child born in every 3,500 to 5,000 male children born will have DMD. Globally that is between 14,600 to 20,900 children born each year with DMD. Only around 100 children per year in the UK are born with DMD…there are only 2,500 individuals in the UK living with this condition…I’m a rare specimen.
DMD usually starts when kids are very young, often around 2 to 5 years old. At first, we might have trouble climbing stairs, running, or jumping.
As we get older, we can need help walking and might use a wheelchair to get around. This is what happened with me, I couldn’t really jump when I was little, but I could walk, run and climb stairs. This all became difficult as I became older, so I am now a full time wheelchair user.
Eventually, even the muscles that help with breathing or the heart can get weaker, so doctors help make sure those muscles stay as healthy as possible.
This means I have to have a careful balance of medications and a healthy diet, to help my body function well.
How does DMD affect families?
DMD doesn’t just affect me as the person who has it, it also affects my family.
Parents and siblings work together to give lots of love, support, and care.
Families can spend extra time going to doctor visits, helping with therapy, or making sure our home is a safe and comfortable place. This includes making space in rooms so rooms are accessible for my wheelchair…on a plus size I have the largest bedroom in the house.
It can sometimes feel hard or overwhelming, but my families are so close as we have learnt how to face challenges together.
What do kids with DMD want others to know?
Kids with DMD are just like anyone else—we love to play, laugh, and spend time with our friends and family… we’re not aliens.
Even when we need extra help with some things, we still want to be included and treated kindly.
It’s important to remember that DMD doesn’t change who we are on the inside.
In short, DMD is a condition that makes muscles weaker over time, but with love, support, and understanding, kids with DMD and our families can still find joy, spread cheer and make the most out of life!