ABOUT DUCHENNE

Living with Duchenne

Alex’s Perspective

“Duchenne is part of my life - but it doesn’t define who I am.”

Who I Am

I’m Alex. I’m 19, and I live with Duchenne Muscular Dystrophy.

I was diagnosed just before my fourth birthday. I’ve grown up knowing life would be different, but I try not to overthink it – I just get on with things and make the most of what I can do.

Everyday Life

Living with Duchenne means daily medication and regular hospital appointments, including:

  • Physio
  • Neurology
  • Heart checks
  • MRIs
  • Bone scans
  • And (very) long journeys for clinical trials

It’s all part of my routine. It’s a lot sometimes, but it’s normal for me.

Clinical Trials

I’ve been part of clinical trials for most of my life.

They’re not always easy, but I know why they matter. If what I’m doing helps move treatments forward for others with Duchenne, then it feels worth it.

What Duchenne Changes

There are things I can’t do anymore.

I use my wheelchair full-time now, and things like walking on the beach, getting into the sea, or playing football just aren’t possible. Walking itself is a thing of the past.

Steroids have also affected my bones. I broke my hip when I was nine, and I broke my leg in a fall last year – stuff like that is a daily hazard and just happens more easily when you live with Duchenne.

Adapting

You learn to adapt.

My wheelchair doesn’t stop me from living my life – it just changes how I do things. Driving is a big one for me. Having that independence makes a massive difference.

Life Now

I’m studying Quantity Surveying at Nottingham Trent University and working full-time at the business my dad started.

I want to work, earn my own money, build a career, and feel like I’m contributing – just like anyone else my age.

Mental Health & Support

Living with Duchenne isn’t just physical – it messes with your head sometimes, too.

Some days you want to talk about it. Other days you don’t. Both are fine. Having support around you makes a huge difference, and I’ve been lucky to have that through Alex’s Wish and the Duchenne community.

My Outlook

I know Duchenne takes a lot away. I also know I’m one of the lucky ones – I walked until I was 18, which doesn’t happen for everyone.
I try to stay positive and not let Duchenne run my life. That’s where #BeMoreAlex came from.

“When life gives you lemons, make lemonade, or lemon meringue pie, or whatever else you want that day.”