Life with LQTS and LVNC by Abi Edwards
October 2018, aged 14 and asymptomatic- I was taken to a CRY screening as a precautionary check by my mum at St. George’s Hospital. Little did I know that that test would be the beginning of a whole new journey in my life. I was told that they had picked up an abnormality and they […]
Every Cloud by Thomas Flanighan
After serving nine years in the military as a Royal Marines Commando, I needed a new challenge and started striving towards a career as a Commercial Pilot. The flying medical involved an ECG which showed abnormal results. At the time, I was not concerned as the Doctor who performed it was almost certain it was […]
It’s Scarier Not to Die by Jamie Poole
For the first time in 12 years, I experienced my first incident of an inappropriate shock. Not just one, but five, one after the other. Bang. Bang. Bang. Bang. Bang. To say it was painful would be a gross understatement. It was a combination of the most painful experience of my life, mixed with the […]
We thought something was wrong with ECG leads or monitor but… Blog by Jess-Lee Welch
I was in my final year of uni studying Sport and Exercise Science and we were in the lab doing ECGs on one another. When my lecturer (Dr David Oxborough) came to check on mine, he thought something was wrong with the monitor or leads. Long story short, the monitor wasn’t broken. After staying behind […]
I am forever grateful to the GP who saved my life! Blog by Roxy Ball
From being little I always remember I found running and PE hard. I was good at rounders because I could hit the ball and then race around the posts! But everything else I was bad at. I never had any stamina! I always got worried about things too, it would just come on. I used […]
My story of being diagnosed with LQT in the midst of a pandemic by Ruth Williams
In April of this year, I was diagnosed with Long QT Syndrome (LQTS). In the midst of a pandemic, this was the most unwelcome conclusion to my ongoing investigations! In 2001, my sister Ellie died very suddenly whilst on a telephone call with me one morning. I found her body later that day with the […]
A Reflection on My Experience Living with a Heart Condition by Daniel Redfearn
I had no idea at the end of the summer holidays in 2011 that the following months would be a defining period of my life. I was thirteen years old and soon to start another year of secondary school. At this time, my favourite activity was undoubtedly exercise – I followed many different sports and […]
My story so far – Left Ventricular Non-Compaction Cardiomyopathy
Hello. My name is Phoebe and I’m 22 years old. When I was three years old, I was admitted to Great Ormond Street Hospital to have open heart surgery to repair an Atrial Septal Defect (ASD), other wise known as a hole in my heart. Since then I was very healthy and finished school and […]
Comparing 2008 to now
Being in lockdown, being in isolation it’s made me re-experience a life I had before and compare the feelings I have now, to that I had back then. We all live life a little blindly, we all learn from an early age about death, but for many years we’re shielded from it by our parents, […]
Brugada and Self-Isolation
Monday 16th March I celebrated my 12th re-birthday, re-birthday is a term that all cardiac arrest survivors use to celebrate surviving a cardiac arrest. I didn’t really celebrate it this year, maybe ‘cause of this underlying cloud that was shadowing the world. This cloud, this virus COVID-19/ Coronavirus, we first heard about this virus whilst […]