I chose the title ‘The Rhythm of her Heart’ because that was the first song I wrote when I was diagnosed with my heart condition, Long QT Syndrome, at 16 years old. Being a teenager and diagnosed with a life threatening heart condition is not something one can process easily. I used music to process the shock, fear and anxiety I suddenly felt.
Fast forward 14 years and as a 30-year-old woman I am by no means rid of the fear of cardiac arrest, it centres my everyday. When I take my beta blocker, when I’m prescribed a new medication, when I run. But the difference is I’ve learnt to process it through living the best life I possibly can and I would say keeping fit and running has formed a key part of that.
The thing is I know I am incredibly lucky to live with the knowledge of my condition, so I can lead the healthiest life I can. But many families don’t have that chance, and devastatingly have catastrophic outcomes. Cardiac Risk in the Young is working to prevent these outcomes, by raising awareness about heart conditions like mine and screening for undiagnosed ones. Twelve apparently fit and health young people die every week in the UK to undiagnosed heart conditions and if my run could go a small way to lowering that statistic, it would mean the world.
What I would say though is, Long QT Syndrome hasn’t ruined my life, it’s changed the way I think about life. It’s allowed me to treasure today and squeeze the absolutely lemon out of what life can offer. Tomorrow isn’t guaranteed for any of us, and so gratitude certainly forms the foundation of my daily routine now. I encourage you to do the same and appreciate the little things this beautiful life can offer.
I’m raising money in aid of Cardiac Risk in the Young and every donation will help those who are at risk of cardiac arrest or complications, or families who sadly didn’t know their relatives had cardiac problems. The money from this run of mine will help towards screening for undiagnosed heart conditions and research for those who may be at risk. Please join me in making that difference to those who really need it.
