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  • Medical Information
    • Conditions
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      • FAQs about ICDs
      • FAQ’s about CRY’s Research
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myheart Members Stories

Conditions

Lagan Valley AC raise vital funds for CRY

The charity that helped to save the life of one of its young athletes through its screening programme June 2025 17-year-old, Scott Owen, presented a cheque for £2,000 as he

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Ben’s big daft run for Cardiac Risk in the Young

Last year (2024) I was diagnosed with a heart arrythmia that required two procedures to fix over the course of about 10 months. Prior to this I was fit and

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The rhythm of her heart – raising money in aid of CRY

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

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624 Reasons Why by Joe McEwan

My name is Joe, and I suppose you could say I’m your fairly average 23-year-old man. I graduated from university with a law degree in 2022, have played sport pretty

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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

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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

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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)

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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I was diagnosed with LQT after 20 years..by Rebecca Scheffe

My name is Becky and I was diagnosed with Long QT Syndrome in 2010 when I was 37 years old. At the age of 17, I had a terrible experience

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My journey with ARVC by Gavin Boyce

My journey with ARVC started on January 16th 2012 when I woke up in hospital to see a nurse looking back at me trying to offer me some reassuring words.

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Living with a Fontan Circulation – Tricuspid Atresia by Jara Weinkauf

Even though there was no history of heart disease in my family and my parents led a very healthy lifestyle, I was born with tricuspid atresia in 1986 in Berlin/Germany.

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Super Ventricular Tachycardia (SVT) by Samantha McLaren

I have been suffering from SVT attacks since March 2010 when I suddenly collapsed at work. I was taken to A&E for tests, my heart rate was very high reaching

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Paul Cowling-DCM

Before I share my experiences and try to give some idea of how I try to cope with what has happened, one thing should be made very clear: having a

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Zenia Selby- earlier diagnosed with WPW

I was out on a 5k run when suddenly my heart started beating several times faster than it should have been. I stopped, sat down, breathed deeply, but nothing would

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Paula Beck

Paula Beck (Simmonds) wrote her story to be included in the myheart booklet which was launched in November, 2013. I was diagnosed with Brugada syndrome on 8th August 2011 at

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Alessandro Miccoli

Alessandro Miccoli wrote his story to be included in the myheart booklet which was launched in November, 2013. It wasn’t until the end of 2012 that a journalist first introduced

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Emma Jackson

Emma Jackson wrote her story to be included in the myheart booklet which was launched in November, 2013. I never liked sports when I was younger and was never any

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Sian Donnelly

Sian Donnelly wrote her story to be included in the myheart booklet which was launched in November, 2013. Whilst on a family holiday in 2004, my brother Adam died suddenly

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Chris Currie

Chris Currie wrote his story to be included in the myheart booklet which was launched in November, 2013. I was 24 and having the time of my life travelling around

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Lucy Challis

Lucy Challis wrote her story to be included in the myheart booklet which was launched in November, 2013. On Sunday 29th January 2006, my older brother Stuart, age 25, collapsed

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Mallory Brand

Mallory Brand wrote her story to be included in the myheart booklet which was launched in November, 2013. I discovered I had Wolff-Parkinson-White (WPW) syndrome by chance. I manage events

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James Bailey

James Bailey wrote his story to be included in the myheart booklet which was launched in November, 2013. I was pumped up for the game. The adrenaline was rushing through

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Antony Eames

Tony Eames wrote his story to be included in the myheart booklet which was launched in November, 2013. I had my first episode of fainting at 4 years old. From

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Louise Dee

Living with long QT syndrome Hi, my name is Louise. It all started in 1990 when I was 8 yrs old. I woke up hearing an alarm clock and realised

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Stacy

Living with Wolff Parkinson White syndrome Hi, my name is Stacy and I am 19 years old. I was a very healthy child and was always very active and played

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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

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Living with long QT syndrome – Hayley Brown

Living with long QT syndrome I was 19 years old and had just failed my second driving test when my first and only attack happened. I ran through the garden

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Living with hypertrophic cardiomyopathy – Fraser Thomas

Living with hypertrophic cardiomyopathy I am one of the few lucky parents as my son, Fraser, survived a full cardiac arrest while playing football last year. He had no previous

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Living with right ventricular outflow tract ventricular tachycardia (RVOT-VT) – Julia Hubbard

Living with right ventricular outflow tract ventricular tachycardia (RVOT-VT) I have represented Great Britain in Bobsleigh since 2006 and In October 2007 I crashed in a race and sustained fractured

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