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Every week, eight apparently healthy, young
people die from undiagnosed heart condition but many of these tragedies can
be prevented. Joani Walsh reports.
On June 7, 2005 Joel Davies rushed
back from work to make sure that he was at home when his Glastonbury
Festival tickets was delivered. It arrived around 5pm and Joel spent
the evening excitedly chatting to friends on the internet. His last
message at 7.45pm read: "I'm off for a bit...be back later."
But he never returned. Joel, who was 23,
died in his sleep some time during the night and was discovered the next
morning by his 18-year-old brother Jack. The coroner later recorded a
verdict of death by natural causes. Two years on, his family and
friends are still struggling to comet to terms with the loss of a popular
and much-loved man.
"How can the unexplained death of an apparently
healthy, young man ever be described as natural?" asks his mother Jane.
It is a question being asked by hundreds of
families every year. In the UK, as many as eight seemingly fit and
healthy young people die every week from previously undiagnosed heart
disorders. When a cause of death cannot be established, sudden adult
death syndrome (SADS) or sudden arrhythmia death syndrome is often cited.
"Recording that someone died of 'natural causes'
simply means there was no foul play," says Dr Sanjay Sharma, director of
heart muscle disease at King's College Hospital, London.
"In most instances, deaths in apparently healthy
young people are due to electrical disturbances within the heart. The
chances of Joel's being a cardiac death are almost 100 per cent."
Found in time, heart conditions such as Brugada
syndrome and Long QT syndrome can be treated and lives saved.
Bradley Farrow discovered he had Brugada syndrome
when he apparently fainted while working at his weekend job in a security
company at the age of 16.
Fortunately, he wasn't sitting down at the time or
the episode could have been fatal.
I was standing talking to my boss when I blacked
out without any warning," explains Bradley.
"I later found out my heart had stopped. It
was only the fore of my chest hitting the floor as I fell that jolted it
back into action."
Bradley, now 21, was told by doctors that he had
suffered a simple fainting spell and was sent home to his parents, Eddie and
Dave, with whom he still lives in Woking, Surrey.
But his mother Eddie, a retired nurse, refused to
accept the diagnosis and sent her son back to hospital with the instruction
that he wasn't to be come home until they'd found out what was wrong.
Doctors carried out an electrocardiogram (ECG) - which looks at the
electrical tracing of the heart and passed the 'unusual' readings to the
Royal Brompton Hospital in London.
Three weeks later came confirmation of a diagnosis
of Brugada syndrome, a genetic condition which causes a disturbance in the
electrical function of the heart - like a short circuit - that can cause the
heart to stop beating.
After a two-month wait, Bradley underwent an
operation to insert a defibrillator, an electronic box that sits under the
skin is attached to the heart. The device delivers an electric shock
that resets the heart when it falls out of rhythm.
It has since fired twice - on the first occasion
delivering such a powerful jolt, Bradley was thrown from the bike he was
riding at the time.
Since his operation, life for Bradle
y has continued as normal.
"The only difference my condition has made is that
I couldn't join the Army when I left school.
"But I loved climbing, abseiling and kayaking and
I still continue to play rugby - although everyone is too scared to tackle
me," he says.
Screening for heart rhythm disorders is only
available on the NHS to young people displaying symptoms of a possible
underlying heart condition, such as chest pain (especially after exercise),
blackouts, palpitations, breathlessness or prolonged dizziness.
Because many SADS conditions are genetic, the
screening should also be offered to relatives of people who have died before
the age of 40 without any warning signs, although this is not always
the case.
The charity Cardiac Risk in the Young (CRY) argues
that screening should be available to anyone under 35 who wants to ensure
that their heart is healthy.
The charity's Heart Screening Awareness
Partnership campaign aims to increase awareness of and access to screening
for young people in an attempt to reduce the number of deaths from SADS.
Clinics are open in north London, Colchester and
Northern Ireland, although there are plans to open more. A mobile
screening van is also available.
" We would like all young people to have the
chance of being checked," says CRY's deputy chief executive Steve Cox,
"because the first symptom of many of the conditions that fall under the
SADS umbrella is often death itself."
Joel Davies's brothers, Josh and Jack, have been
screened and proved to be healthy as far as doctors are able to determine.
"It wasn't offered, though," says Jane. "We had to fight for it and
when you're torn up with grief, there's hardly any fight left. But I
was angry Joel died without the chance to fight.
"There's nothing we can do to bring him back but
if we could give our lives to have him back. we'd do it. In a
heartbeat."
Visit c-r-y.uk/ecg.htm for more information.
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