"What's wrong with your shoulders?", "Are you scared of the bench press?", "You need to pull your shoulders back.", "You need to pull your stomach in.", "You're all shoulders and arms aren't you?", "You've got bad posture."

These are things I have heard repeatedly all my adult life, for good reason: I have Facioscapulohumeral Muscular Dystrophy. Never heard of it? Nor had I. With only an estimated 2500 people in the UK with the condition, you are more likely to win the lottery than have it. This is my story with FSHD, and how I have come to the path of the Ironman.


I realised about 6 years ago that my chest muscles had vanished, as well as any kind of scapular stability in my back, and that I was getting a lot of impingement in my shoulders. I went to physio before but the typical bad posture exercises made my issues worse so I went without and managed it myself with less pain and improved strength over time, but still without having "proper posture" or chest strength / size. Having played rugby for 13 years, and with the accompanying tremors in my shoulders and arms, I always assumed that my shoulders or neck had taken a hit somewhere and damaged nerves to certain muscles, or that I had simply trained myself into a less-than-ideal state. Never would have guessed this! 


After my 3rd dislocation in the shoulder area (collarbone, do not recommend!) in 2018, I went to a friendly physio to get a "No BS" assessment and he referred me to the neurologist in January 2019, where I found out I have a muscle wasting disease. Great! This was confirmed by genetic testing April 2019. 

After dealing with the initial shock, I've come to realise how freeing this is for me. I had built up a lot of insecurity over my structure, and it would have only gotten worse if the problem wasn't identified. There is no cure, which puts it in perspective that I only have a finite amount of athletic physical ability left in me. This is true for all of us, of course, but FSHD could claim mine at any time. 

I always thought that doing an Ironman would be a great challenge after my rugby days were over. They are now, and I don't see why the plan should change. I confess I thought I may be able to fix my shoulders by then too, but they'll have to do!

In my search for answers on FSHD, I have discovered Muscular Dystrophy UK and all the awesome work they do for people with my condition and other muscle wasting diseases. I do not take any support from them, but having spoken to several people who do I think it is only right that I use this journey of mine to raise awareness and money for others like me who do need their support. 

I would like to say that I do not feel weakened by this disease. I learnt to adapt around my limits before I knew what it was, and the identification of the problem has absolutely resolved my insecurities around my body structure.

I have FSHD. Not only does it not have me, but I am EMPOWERED by it. 

Thank you for reading my story, and for all your support, greatly appreciated. There will be updates on this page, but please check out my Instagram chris.stennett for more regular updates. 

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