myheart Members Stories
Investigations

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

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

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.

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)

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

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

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

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

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

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

My heart stopped with no warning at all! by Jade Hobman
Last year, on the 28th of August, it was a normal day for me and I was skating down the road like I do everyday as I skateboard everywhere. Around

My heart condition’s 25th anniversary by Kerry Shephard
Today (03/02/2020) marks 25 years since my heart went crazy and hit 268 beats per minute while I was brushing my hair and getting ready for college. 25 years since

My allergic reaction saved my life..
I have always fainted for as long as I can remember, through assembly at school or if I stood up for long periods of time. My parents kept taking me

I never really thought much about having a heart condition until I had my son! by Jodie Pearson
My Long QT story – by Jodie Pearson, age 36 I was diagnosed with Long QT1 in 2010 when I was 27 years old. A close relative had been having

If only Hollie was screened at an early age!
I would like to share our story to help raise awareness of fatal Genetic Heart Conditions. In March 2016, our daughter – Hollie Cannon, then aged 15 years, collapsed suddenly

CRY’s myheart representative Rebekah Goddard’s story
It’s been 18 years since I was diagnosed with long QT syndrome and had my very first permanent pacemaker implanted; and 25 years since my father found me unresponsive on

The Story of my Heart Disease – by George Ashby
George Ashby has made an inspiring video about his experience after being diagnosed with a heart condition. https://www.youtube.com/watch?v=wIpi1FqFJ7o George’s mother, Amelia Ashby found that George has a heart murmer after

My journey with ALCAPA – My Story by Serena Freeman
My journey with congenital heart disease began on 19th March 2018 when I was 18 years old. I was at work and had just gone on my lunch break when

Idiopathic Polymorphic Ventricular Tachycardia – My Story by Hollie Bell
Since having my little boy 3 years ago this month I haven’t really felt well and have been suffering palpitations, dizzy spells and feeling breathless. My GP just kept putting