Jonny Goode

Living with long QT syndrome

I love Sport! Any kind of sport and ever since I remember I have spent most of my spare time either hitting a ball, pedalling a bike or running around somewhere.

It came as a great shock to me when I was diagnosed with long QT syndrome at the age of 23.

The way I discovered I had the syndrome was by complete chance. I had been out surfing in Cornwall and that evening had really bad chest pains. At the time I thought I was having some kind of heart attack as the pain was so severe. On returning home I got checked out and was told that it was pericarditis. At the follow up appointment I had an ECG and it came back as abnormal, from there I saw a number of doctors until I saw a specialist in long QT syndrome. A blood test was taken and almost a year later it was confirmed that I did have the syndrome.

I was told that I would have to take a beta-blocker each day and my specialist then reeled off a long list of potentially dangerous things for my syndrome. The one that stuck in my head was not swimming in the sea; this was interesting as at the time I was working as a surf instructor and beach lifeguard!

To be completely honest and without wanting to sound arrogant or complacent I haven’t changed much since I was diagnosed with the syndrome. I have a faith in God and believe that he has my number and when my time is up, I will get to run around in heaven. Life is too short to worry. My family is my life. I have a two year old daughter called Poppy and my wife Miranda is pregnant with our second baby due in October.

I look after myself and so don’t drink alcohol or caffeine. I exercise everyday and love pushing my body to the limit. One of my favourite moments is when I finish a race or event and I get to present Poppy with my medal.

In April I ran my third London Marathon, I ran for CRY and feel compelled to help people understand that despite having long QT syndrome it doesn’t have to stop you enjoying life and competing in events whatever sport you enjoy.

This August I will be competing in my third London Triathlon hoping to get in under 2hrs 20mins.

I have completed charity bike rides from John O’Groats to Lands End, Calais to Nice and in a few weeks I am cycling from Nice to Naples. I coach cricket, football and tennis to young people in North Devon and love the way sport can teach valuable life skills and bring the best out in people.

Long QT syndrome doesn’t have to stop you doing what you love. For me it makes me realise who I am and it makes me feel alive.