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Beyond my FSHD diagnosis: a chance to learn and grow

Ahead of World FSHD Day on 20 June, Chris Stennett, a freelance writer diagnosed with Facioscapulohumeral muscular dystrophy (FSHD) four years ago, tells us how his diagnosis has turbo charged his desire to embrace new opportunities and try new things.

For much of my late teens and early twenties, the boys would make comments like “Are you scared of the bench press?” and “You’re all shoulders aren’t you.” All good banter as you’d expect from rugby lads, and I put my strange posture down to working at a desk and playing rugby week in week out. You’re never really 100% when you’ve been playing every weekend for 13 years.

But that all changed four years ago when, after yet another rugby injury ­– a shoulder dislocation – I was referred to a neurologist. “You’ve got FSHD,” the consultant told me, after genetic testing was completed. I was only 26.

The diagnosis

The string of four letters meant little to me. At the time, I knew very little about muscle-wasting conditions in general – let alone that there were people out there running around or playing rugby with such a condition.

I learnt that FSHD is a muscle-wasting condition that usually results in weakening of the muscles in the face, shoulder blades and upper arms.  It’s a condition caused by a genetic mutation, and there is currently no cure.

Everything began to make sense – I’d never been strong at bench pressing, experienced shoulder problems from my late teens, and my chest and back weren’t as strong as they could be.

After my diagnosis I was pretty messed up mentally

The risk of injury was too high for me to continue to play rugby or take part in mixed martial arts –  hobbies that I’d been committed to for years. It went further than that because the rugby club is like a family to me.

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 from contact sports early. At this particular time in my life, I really needed that outlet, that release. I was having trouble focusing in my day job in the office, as I couldn’t think of anything else.

Ironman calling

Within two months of being diagnosed, I decided to commit to completing the Ironman triathlon challenge, which involves a 2.4 mile swim, 112 mile bike ride and a 26.2 mile run. It is something I’ve always planned to do when I’d stopped playing rugby, and I knew that the training would be good for me, giving me something physical to work towards.

I thought, 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. All sorts of stuff was going through my mind, so I thought, let’s have a go and see what happens.

I’ve since fallen in love with cycling, learnt to swim, and I’ve been officially able to call myself a triathlete after completing my first super-sprint triathlon back in 2019

Fast forward to today, and the Austria Ironman is just around the corner.

Mover and shaker

It’s been a long road, and life has changed a lot since my initial diagnosis. This condition has pushed me to do things I would have procrastinated on otherwise. Soon after my diagnosis I went to Costa Rica to build a turtle hatchery. When I came back to Felixstowe, I realised I wanted to travel more, quit my job in logistics and retrained as a copywriter during the lockdown. I now travel the world with my girlfriend whom I met during my adventures, all whilst running a marketing agency.

A life lesson

My journey has taught me a lot about perseverance. I was lucky to get a place at the London Marathon through Muscular Dystrophy UK. I was originally meant to run in 2020 but it was called off because of the pandemic. Then in 2021, I was injured and couldn’t run, and in 2022 I had to withdraw again because I’d broken my arm in a cycling accident, but in 2023 things finally lined up and I completed it! Ironman Austria will be my second attempt at the full Ironman distance – as I didn’t manage to complete it in 2021.

Preparation for Austria is now complete, and I am cutting back on training so my body can absorb the work I’ve done in my peak weeks of training, and so I can get to the start line in good condition.

FSHD continues to sap my strength, but I remain strong minded

Completing the open water swim with front crawl is a small concern because the muscles in my core are weak and I struggle with snaking in the water when I’m tired. I am a proficient breaststroke swimmer, so I have no doubt I will complete the swim, but by doing breaststroke I fatigue my legs before the cycle element even starts!

In terms of the cycle element, I find it hard to balance on my bike when going downhill fast – again related to my weak core caused by FSHD – but I’ve got my endurance down. I feel good because I’ve been training on the hills in Spain, which are a lot bigger than the ones I’ll take on in Austria. Before I left the UK, I was wearing thick layers to mimic how hot it will be on the big day, and I’m happy that I am very well acclimatised to the weather here.

Running is my Achilles heel – once I’m tired, I find it hard to maintain posture up top – and recovery takes a long time – but it’s the bottom of my priority list! As long as I can make it through the swim and the cycle, I’ll get round the marathon.

After speaking publicly about my condition in a national newspaper and fundraising for Muscular Dystrophy UK, I’ve had a huge outpouring of support, especially from the community of people who also live with FSHD. Many of them found me on social media and have got in touch.

Some people have said that my story has inspired them, and others say that seeing me train helps them train too. At times when I feel low or demotivated, I know I’m not the only one living with FSHD and we’re there to support one another through it.

Chris will be appearing via video link at the Muscular Dystrophy UK Celebrity Sports Quiz

The facts
  • FSHD is one of the most common forms of muscular dystrophy.
  • In the UK it is estimated that between 2,000-2,500 people have FSHD.
  • One fairly common feature of FSHD is an asymmetry of weakness: where one side of the body is more affected than the other.
  • Up to one third of people with FSHD remain unaware of their symptoms until old age.
  • Muscle pain is quite a frequent complaint in FSHD, often experienced in the early stages.

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