In 2018, Lew Mathias, 29, an engineering manager from Clapham, London was diagnosed with Myotonic Dystrophy Type 1, a rare muscle wasting condition. 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, he has signed up to take part in the London Marathon 2025. Lew is running in support of Muscular Dystrophy UK, the leading charity for the 110,000 adults and children in the UK living with one of over 60 muscle wasting and weakening conditions, and hopes to increase awareness while fundraising to help fund research into his condition.
Lew Mathias
Lew Mathias
Lew doesn’t know what the future holds but after getting into running, he sees this marathon as an opportunity to raise awareness and help others living with a muscle wasting condition. “My life changed forever when I was diagnosed with Myotonic Dystrophy Type 1,” explains Lew. “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 it quiet 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.”
Until a year ago, Lew had never run more than 10km but now, with his marathon training well underway, he is making the most of being outdoors and has found he enjoys running. “I did cross country at school and team sports at university and got into going to the gym a couple of years ago,” said Lew. “I discovered I enjoy running and after joining a local running club it’s become part of my life, and I decided to start taking on challenges. 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.”
Lew credits Muscular Dystrophy UK with providing essential information and support, making this marathon deeply personal. “The charity has been an invaluable resource,” said Lew. “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 for Muscular Dystrophy UK, I want to help others get the same support I have, as well as helping to fund research into treatments.”
Lew hopes to raise £2,000 for Muscular Dystrophy UK by running the London Marathon. Follow his journey at justgiving.com/page/lew-mathias-mduk
