In 2018, Lew Mathias was diagnosed with myotonic dystrophy type 1, a rare muscle wasting condition. Six years later he has signed up to run the London Marathon. Lew explains his motivation and why he is so determined to prove to himself, as well as to his friends and family, that he can overcome challenges and achieve extraordinary things despite his condition.
“My life changed when I was diagnosed but I want to prove I can do this”: Running the London Marathon 2025
My life changed forever when I was diagnosed with myotonic dystrophy type 1. I first went to the GP because I was experiencing stiffness in my hands. At the time I was playing Ultimate Frisbee at university and was finding it frustrating as it was affecting my ability to grip and catch. The GP didn’t know what it was but referred me to a neurologist who described my symptoms as ‘textbook’ for Myotonic Dystrophy before genetic tests confirmed it.
“As the first in my family to receive this diagnosis, followed by my dad and two brothers, it was a daunting and uncertain time.”
I’m a rational person and always try to focus on the positives, but it has been a difficult journey.
I kept quiet about my condition for quite a few years as I didn’t want people to see me any differently. But I’m determined not to let it define me or dictate my life and am now in a place where I want to do something positive to help raise money and awareness.
I don’t know what the future holds but I see this marathon as an opportunity
Until a year ago, I had never run more than 10km. I did cross country at school, team sports at university and got into going to the gym a couple of years ago. When I discovered I quite liked running, I joined a local running club, and it’s become part of my life. Now, with my training for the London Marathon well underway, I’m making the most of being outdoors and have found that I really enjoy running!
I have noticed more symptoms of my condition in recent years, like weakness in my fingertips and excessive daytime fatigue, but aside from that I’m fitter than ever.
Taking part in the London Marathon as part of Team MDUK is a once-in-a-lifetime opportunity to make a positive impact and show that even in the face of adversity, an optimistic attitude and sheer determination can always prevail.
Raising money and increasing awareness
Running this marathon for Muscular Dystrophy UK is deeply personal.
“The charity has been an invaluable resource.”
They offer such great support, not just for the person living with a condition, but the whole family.
Lots of people have never heard of my condition and that’s part of the reason I want to run this marathon, to help raise awareness. It’s a rare and complex condition, which even many doctors are unfamiliar with. By raising money, I want to help others get the same support I have, as well as helping to fund research into treatments.
Support Lew's fundraising
By supporting Lew’s efforts, you’ll be contributing to crucial research and support services for individuals living with muscle wasting conditions
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Find out how you can get involved and change the future of muscle wasting conditions.
