Suffolk man with rare muscle-wasting disease tackling Ironman Austria triathlon

Credit: Muscular Dystrophy UK Chris Stennett, who has Facioscapulohumeral Muscular Dystrophy, is taking on the gruelling triathlon to raise money for charity.
Chris Stennett, who has facioscapulohumeral muscular dystrophy, is taking on the gruelling triathlon to raise money for charity. Credit: Muscular Dystrophy UK

A triathlete with an incurable rare muscle-wasting condition says he is tackling an Ironman challenge in defiance of the disease which forced him out of team sports "in my prime".

Chris Stennett, from Felixstowe in Suffolk, was diagnosed with Facioscapulohumeral muscular dystrophy (FSHD) four years ago but decided he "wasn't going to let it hold me back".

The genetic disorder results in the gradual weakening of the muscles in the face, shoulder blades and upper arms.

Mr Stennett, a 30-year-old copywriter, is gearing up for a second attempt of Ironman Austria on Sunday.

In the challenge, competitors take on a 2.4 mile swim and 112-mile bike ride, before finishing with a 26.2-mile marathon run.

Mr Stennett first attempted the challenge in 2021 but did not finish.

Mr Stennett, from Felixstowe, was diagnosed with the condition after repeated rugby injuries. Credit: Muscular Dystrophy UK

Once a keen rugby player, Mr Stennett was diagnosed with the condition in 2019.

He had been referred to a neurologist after a shoulder dislocation, following repeated rugby injuries and over 10 years of shoulder weakness.

A genetic test confirmed he was living with FSHD, a condition that affects approximately 2,500 people in the UK.

There is currently no cure.

“The risk of injury was too high for me to continue playing rugby or practising mixed martial arts – two hobbies that gave me the most enjoyment,” said Mr Stennett.

“I’ve always been athletic – and at the age of 26 I was supposed to be entering my prime, but instead I was having to retire early.

“It knocked me for six and made me feel down.

“Within two months of getting the diagnosis, I decided I wasn’t going to let it hold me back, and I decided to complete the Ironman triathlon challenge.

“I knew the training would be good for me and would give me something to focus on.

“I thought to myself: I’m never going to get a better chance – who knows what will happen in 10 years’ time? I could be in a wheelchair by then.”

He is raising funds and awareness for Muscular Dystrophy UK, the national charity that supports those with muscle wasting conditions.

Earlier this year, Mr Stennett took part in the Marbella 70.3 half Ironman and the London Marathon, with Ironman Austria to be his third major challenge in three months.

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