“It was the toughest thing I’ve ever done, but I’m very proud of what I achieved”

Luke lives with Charcot-Marie-Tooth disease (CMT) and recently ran his first half marathon. He tells us how it felt to take on the challenge of the Manchester Half Marathon and why he wants to fundraise and increase awareness.

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I was diagnosed with Charcot-Marie-Tooth disease (CMT) around the age of 10, after my mum and teachers noticed I walked with a limp and was always dropping things.

For me, CMT means I struggle with my balance and coordination as well as experiencing daily aches and pains. Simple things like walking any real distance, climbing stairs, or even just standing for extended periods, can be a challenge. There is currently no cure, so for me it’s about adapting, keeping on top of the pain, and raising money to help fund research.

My feet were, and still are, my main issue. I had a number of medical procedures growing up, mostly to help strengthen my feet, but these had limited success. I struggle with pain almost every day, especially during prolonged exercise. At school, this meant sitting out of some activities and I also had issues with my hand cramping if I had to write for too long, making exams hard.

“As an adult, I’ve encountered a lack of knowledge and understanding around my condition. I think there’s a real stigma around hidden disabilities, which can be hard to navigate at times.”

Because my condition isn’t immediately obvious from looking at me, I sometimes feel judged. For example, having a blue badge in my car. But I try to call it out if I see it and take the opportunity to educate people and therefore hopefully raise awareness and reduce judgement on others. Challenging stigma is important. This type of judgement doesn’t just impact me but many other people living with different conditions that may not be immediately visible.

When it comes to running, I’ve done some in the past, but this was the longest distance I have ever attempted. Previously, I’ve always tapped out of training when I got to around the 5km mark as the pain felt like it was too much. But this year, I made the decision to challenge myself to push well past it.

I took it slow and signed up for the Manchester Half Marathon in January, giving myself ten months – longer than is usually needed to train for a half marathon. I’m prone to injuries and need extra rest but I kept on top of any difficulties with pain relief, stretches and physio exercises, as well as occasionally using foot supports.

When my partner Cameron agreed to take on the challenge with me, he suggested we do it in support of Muscular Dystrophy UK.

I was excited in the run-up to the event, and despite the pain, which was excruciating at some points, the day itself was a really enjoyable experience. I’m glad I took the training slowly as that meant I had time for extra rest when I needed it, and I think that would be my main piece of advice to anyone thinking of doing something like this if they’re living with a condition like mine. Allow more time and look after yourself. It takes as long as it takes!

I set myself a vague time goal of running the 13.1 miles in under two and half hours and finished in 02:29:16. I’m thrilled I made it, with 44 seconds to spare! However, I’ve never felt more acutely aware of living with CMT. Not just the pain, which was constant, but really feeling the limits of my own body while seeing so many others able to go quicker and more steadily.

I’m so grateful to Cameron for joining me for the challenge. He’s been really supportive, and it’s been great to do this together. Also, some of my work colleagues ran too. The journey was definitely tough, and I’ve had to adapt and push my limits in different ways. But it’s been so rewarding and I’m proud of what we achieved.

Thanks to the generous donations of our friends and family, we raised over £2,800, and it’s incredibly gratifying to know that this will help other adults and children who struggle with neuromuscular conditions.