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This page is dedicated to stories of young people living with rare heart conditions. 

A mixture of newspaper articles and personal accounts, these narratives describe some of the challenges encountered by young people living with rare heart conditions; how well they have coped with their conditions; and how positively they now approach their lives.

Paul Cooper

Atrial Fibrillation

I was out with some mates one night, when I felt a funny 'butterfly' feeling in my chest - it felt like my heart was racing.  That night I went to the hospital with my mate and they did an ECG.  My heart was doing 188 and was all over the place.  more

Joseph Tanner

Brugada Syndrome

Life is pretty much back to normal for me now, sometimes I even forget that I have an ICD - though it looks like a bar of soap under my skin.  I’ve had my first pacing test, and I’ve been told that I might be able to do marathon running again.  I will listen to my doctors...  more

Kelly-Marie Pearce

Congenital Heart Block

On November 16th 2006 the day started out normally and I got up to go to school.  I wasn't feeling ill at all until I arrived at my first lesson.  I started feeling dizzy and lethargic and I got sent to the medical room where it was eventually decided it would be best to call an ambulance.  more

Jenny Justice

WPW

After we finished the appointment he basically told my father and I that the next time I had an episode where I blacked out like I had been doing, I could easily slip into a coma and not come out.  It was then we decided to have the ablation done.  more

LeeAnn Walpole

WPW

It wasn't until I found out that I was pregnant that I was finally diagnosed with WPW.  I was about 6 weeks along when I had one of the worst episodes yet.  I felt like I couldn't breathe and like I was going to pass out.  more

Valerie Macias

AV Node Tachycardia

I’m now on the road to recovery and I feel wonderful! Recently I’ve been working on my pre-med courses and studying for my MCATs. I plan to pursue a career in Emergency Medicine and musical composition. I enjoy rollerblading, playing softball, piano and violin.  more

Tracey Duncan

RVOT

Physically the body has healed remarkably quickly but mentally the battle continues. It has taken me a while to park the memories of how good an athlete I once was and, honestly, sometimes these thoughts still haunt me.  more

Francesca Maretic

WPW

I got home and just lay on the sofa.  My mum knew something was wrong so she called the doctor, who called the ambulance! I was so scared. I had never been in an ambulance before - what were they going to do to me?!  more

Debra Whiting

RVOT Tachycardia

Then one day in October 2005 when I was 23 I had just finished riding my horse and my heart started feeling like it was skipping a beat. This carried on into the evening and I started to get worried. I went to the doctors and they told me it was nothing to worry about and I should just ignore it.  more

Claire Graham

Tetralogy of Fallot

I was born with Tetralogy of Fallot in 1983, which meant that I was very ill indeed; I gather that I was given a 20% chance of survival as a baby. I couldn't move very much, I was permanently out of breath, so instead of walking I learned to talk and to read.  more

Ian Tunnell

WPW

He went to a lecture on Monday around lunchtime and mentioned to a friend, Jenny, that his heart was beating in an odd way, sort of going in 3's, but was not in any degree of pain. She insisted that he go and see the College nurse, and accompanied him there.  more

Andy Perry

Hypertrophic Cardiomyopathy

At that time very little was known about this condition.  My mom was called into the side room with the doctor - she was alone as dad was at work - and she was told that I wouldn't see my 20th birthday.  more

Alex Archer-Todde

Acute Myocarditis

That night I experienced the worst physical pain I have ever felt and became delirious from the pain, thinking that my body was in halves and that I was wrapped in bandages.  It was as if there was a person in my chest, kicking to get out every time my heart beat.  more

Barry Hooton

Unknown condition - ICD

This story comes from two people - me, Anna (aged 17), a.k.a. "the girlfriend" and Barry (aged 23), a.k.a. "the mystery." Its a long story, but perhaps may give hope to those who are also undiagnosed just like Barry.  more

George Ranger

Supraventricular Tachycardia

As a mother I knew that things were not right with his heart, so I was getting more worried and frustrated every time I was told that there was not a problem.  The day I found that CRY rugby ball outside George's bedroom and called you was the best thing that I could have done.   more

Ashleigh Hughes

Supraventricular Tachycardia

Well where do I start? When I was 11 the doctor heard "a funny noise" in my heart. They thought it was a murmur so sent me for an ECHO of my heart, where they discovered I had a hole in my heart in between the 2 valves, and had to have it repaired.  more

Jack Wright

Hypertrophic Cardiomyopathy

His heart had become enlarged due to a condition called Hypertrophic Obstructive Cardioyomyopathy or as it is knows in medical circles HOCM. The walls of the heart become too thick, affecting the electrical conductivity required to allow the heart to pump properly.  more

Louise Bees

WPW

I had suffered with palpitations for years, but nothing was done about it.  Then, whilst I was pregnant, the attacks became more frequent, and when I told my doctor I was given a 24-hour heart monitor to wear.  After wearing the monitor, I was told that I was fine, so I just carried on.  more

Rob Jackson

ARVC

I am a 31 year old Sergeant in the Army Air Corps, and until recently was a Lynx Helicopter pilot and aircraft commander operating in Northern Ireland. I joined the Army at 18, and have spent the past 12 years living an active, healthy lifestyle as a soldier.  more

Sharlene Brown

Dilated Cardiomyopathy

My son Colby, who is only 13 months old, was diagnosed with Dilated Cardiomyopathy in Jun 2006.  This condition is one of the main causes of 'sudden death syndrome'.  This was obviously very shocking news, but at the minute he is here with us and on medication.  more

Louise Dee

Long QT

Hi, my name is Louise.  It all started when I was 8 yrs old in 1990.  I woke up hearing an alarm clock and realised it was my mother's for work, so I got out of bed and went to turn the alarm off.  When I went into her bedroom I turned the alarm off and tried waking my mother up...  more

Raychel Patrick

WPW

Hey, I'm Raychel Patrick. I'm 14, and I'm from south east Kentucky. I was born at Paul B. Haul Regional Medical Center in Paintsville, Kentucky. I was born a healthy baby, nothing appeared to be wrong...  more

Catherine McGough

Endocardial Fibroelastosis

My name is Catherine, and I thought I would tell my story so that maybe it will give others a bit of hope.  I am now 24 yrs old.  When I was 7 weeks old back in December 1979, I was rushed into the Leeds General Infirmary in heart failure...  more

Bradley Farrow

Brugada Syndrome

I did not realise that anything was wrong with me. Occasionally I would notice that my heart seemed to be going fast like it does when you've just been running, but I would not have been running. I didn't think anything of it as it didn't bother me...  more

Julie Mills

Viral Myocarditis

My story began in August 1998 when, in my third year of a four year teacher training degree, I  felt unwell and left my holiday job early.  I was in the middle of my shift and I had a pain in my chest and a headache and I thought I just had a virus.  more

Antony Eames

Long QT

I had my first episode of fainting at 4 years old. From then on I passed out regularly. Sometimes I passed out several times a day. During this time I was not allowed to do any school sport or go out in the playground.  more

Date

Publication

Article title

The day my heart stopped

I tried to ask what was happening, but the words would not come out.  I had woken up in a hospital bed, with my face covered by an oxygen mask, with my brother and sister, both in tears, sitting next to my bed.  I began to panic.  Had I had an asthma attack? 

By the time she reached the cardiac unit her heart had already stopped.  The surgeon woke all his operating team in the middle of the night to help him to fit the artificial heart, allowing Julie's real heart to recover. 

I had only 20 minutes to live

In fact, I’ve achieved so much over the past few months.  I’ve got a new job; have moved into a flat with my friend Sam, and I’m involved in amateur dramatics.  I’ve even taken part in a couple of shows in the West End. 

Scott's relieved just to be alive

Scott will soon play in an Orient shirt for the final time as the club play two benefit matches to raise money for his family and also for the charity CRY, which aims to raise awareness of cardiac problems in the young.

Local Hero - Julie Mills

Julie Mills, 28, works at Kingston Hospital, volunteers for charity Cardiac Risk in the Young (CRY) and is a member of Kingston Vale Operatic and Dramatic Society. 

Doctors have told me if I kick another football I'll die

Andy Scott knows he should be dead – only a sixth sense prevented him from suffering a fatal heart attack on the pitch.  He has now been forced to quit football after doctors warned any physical exercise could kill him.

Putting my heart and sole into it!

When sports-loving Del Christie suffered a sudden heart attack at the age of 32, he didn’t dare believe that nine years later he would be fit enough to run a marathon. 

Jack's mum on marathon mission as a thank-you for her son

A mum is to run a gruelling 26 miles to help ease the suffering for families with seriously-ill children.  Determined Cheryl is to tackle the London Marathon for the charity that was ‘always there’ when her son was diagnosed with a heart defect. 

Miraculous recovery for near-death sportsman

A keen footballer is making a remarkable recovery after collapsing during a match because of a rare heart condition.  Scott Fleming, 27, was unaware he suffered from the condition, which is almost always fatal if undetected, before his dramatic collapse. 

Rare illness almost cost Scott, 27, his life

A young man who survived a rare heart condition, which can cause sudden death told his terrifying story this week.  Twenty-seven-year-old Scott Fleming had no idea he had Wolfe-Parkinson-White Syndrome until he collapsed while playing football. 

16/07/04

Harwich & Manningtree Standard

Big-hearted Lisa deserves our thanks

Lisa is using her experiences and health problems to help other young people and their families who face similar difficulties.

05/07/04

Press Release 
Wimbledon Tennis

Game, set and match to local girl, Laura
Laura John (14) from Southampton yesterday took on the prestigious role as official ‘coin tosser’ for the Men’s Singles Final at the Wimbledon Tennis Championships – representing the national charity, Cardiac Risk in the Young (CRY).

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