Category: members stories

Everyone should have a choice to get screened! by Harry Trowbridge

In April 2019, at just 15 years old and in my GCSE year, my life took an unexpected turn. I started experiencing a series of unexplained symptoms that left both me and the doctors puzzled. The symptoms, which seemed random and unrelated, included skin lesions on my legs and feet, severe muscle pain in my lower limbs, and at times, an inability to walk.

Amazing things are possible! by Thomas Morris

Our world fell apart 3 years ago when three of us Morris gang (Thomas, Xander and Jude) were diagnosed with a genetic critical heart condition called LQTS. 

Having never had major health issues before, to being told I was very lucky to be alive certainly changed my perspective on life.

‘Heart issues don’t mean your life is over’ by Lewis Nicholson

This is my story and my journey as a person who had a catastrophic birth defect of my heart and by chance and a MRI technician having a good eye, I am still here. In 2012 I was 18 years old and despite having an extremely active childhood including playing Rugby 6 days a week and through all months of the

My WPW story by Kathleen Dymond

My journey starts in my early teens when I became aware of my heart pounding in my chest, my heart racing, my throat constricting like hands that had wrapped themselves like a tight vine around my neck. I would feel faint like I would collapse and unable to catch my breath. It felt like I was going to suddenly die.

I have a heart condition but it’s not the end of the world!-by Gem O’Reilly

Since being diagnosed with my heart condition at 16 years old, I’ve been trying to understand my body, to understand my limitations and capabilities.  That has stemmed into my life in many ways, particularly when it comes to challenging my body and perceptions of what makes a healthy lifestyle.  It has led to me running long distance in a way

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 thought it would be LQTS,

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 ‘Athletic Heart’. They asked me

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 most terrifying. Not only was