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Some
10,000 young people in Britain are in danger of losing their lives to a
heart disorder that often remains undetected until too late. Sudden Death
Syndrome (SDS) claims four victims every week and is the most common cause
of unexpected death in people under 30. Alarmingly, those at greatest risk
appear otherwise fit and healthy and often considerably more athletic than
the average teenager.
Victims of the condition
generally suffer from inherited forms of a heart and muscle disorder, the
first symptoms of which can be a fatal heart attack. There are 11 main
types of cardiac abnormalities, although Hypertrophic Cardiomyopathy (HCM)
- occurring when the heart muscle becomes thickened and cells appear
disorganised, leading to irregular heart beat - is by far the most
widespread. A recent study in America showed that as many as one in 500
people have HCM. The second major form is Arrhythmogenic Right Ventricular
Cardiomyopathy (ARVC), a result of heart muscle cells gradually being
replaced with fibrous tissue and fat. This blocks the heart's electrical
impulses and prevents the organ from pumping effectively.
There are simple tests
available to check for the illness, and the charity CRY (Cardiac Risk in
the Young) is campaigning for widespread screening of schoolchildren and
of youngsters who take part in sports and fitness activities.
The tests are simple and
painless. An electrocardiogram (ECG) test takes only a few minutes to
complete, and records the electrical signals from the heart, which are
then analysed by a cardiologist. Any unusual signs can be detected
immediately. A second test, the echocardiogram (Echo) is an ultrasound
assessment of the heart and valve structure which provides a guide to
muscle thickness and size of the heart's chambers.
Anyone who has had a family
member with SDS is entitled to have both tests free on the National Health
Service. But Alison Cox, the founder of CRY, wants governing bodies of
sports in Britain to introduce mandatory screening for all participating
children.
Her own son, Steve, looked
set to follow in the footsteps of his father, Mark, a former world-ranked
tennis player, when he won a tennis scholarship to a university in the
United States. But after the death of another student, Steve was screened
for heart problems and was told he was suffering from ARVC. He was forced
to give up tennis and stop vigorous exercise. Sport is not a direct cause
of Sudden Death Syndrome, but it can trigger it. The strain that is placed
on the heart during extreme physical exertion stresses it more than usual,
putting it at risk if there is an underlying abnormality. Alison Cox
explains: "For a young person who has an existing heart condition but
doesn't know about it, the amount of effort they give to sport can
significantly increase the risk of a cardiac arrest."
The death toll includes a
depressingly large number of potentially fine sportsmen and women. Perhaps
the most high-profile case was that of Daniel Yorath, son of the former
international footballer and manager of Wales, Terry Yorath, who died in
1992 at the age of 15. He was kicking a ball around in his back garden
shortly after signing for Leeds United when he collapsed in front of his
father.
"We thought Daniel was
one of the healthiest boys in the world, yet seconds later he was
dead," Yorath said at the time. "Nobody expects their child to
go before they do; that is the worst thing about it."
Countless other families have
been dealt similarly devastating blows. David Longhurst, a 25-year-old
York City player, collapsed and died during a televised match; 16-year-old
John Marshall, a junior international footballer of the year, died on the
day he was due to sign for Everton FC; Adrian Hawkins, 22, was on the
shortlist for a place in the Great Britain cycling team at the Barcelona
Olympics when he died after a race; talented swimmer Laura Moss, who was
in the elite Olympic 2000 squad, was just 13 when she suffered a cardiac
arrest; Owen Povey, 18, a junior tennis player for Wales, collapsed and
died after a training session; and cricketer Parvez Mizra died in his
sleep, not long after he had signed to play for Worcestershire.
Some sports' governing bodies
have responded to news of such tragedies by agreeing to work with CRY to
screen teams and individuals. So far, 400 of the country's top tennis
players, 80 elite cyclists, the national junior rowing squad and the
Olympic pentathlon team have undergone the tests.
At Everton Football Club, all
players aged nine to 16 are now screened comprehensively in a scheme
established by the club's physiotherapist, Les Helm, after the death of
John Marshall. "Everton has the ideal system, with different levels
of obligatory cardiovascular testing throughout the age-groups," says
Cox. "This is the kind of set-up that should act as a
benchmark."
Others have been slower off
the mark. It was only after the death of 26-year-old runner Anna Loyley,
just seconds after she crossed the finishing line in the 1998 Bath Half
Marathon, that UK Athletics, in conjunction with the National Sports
Medicine Institute, established an expert panel to look into protecting
competitors taking part in road races.
"The incidence of HCM
deaths in mass running events remains relatively rare, with the estimated
risk being around one in 80,000 runners, but it is definitely something we
are focusing on," says Dr Malcolm Brown, medical director of UK
Athletics.
"Initially, we are
planning to introduce a questionnaire of risk assessment to determine
whether a runner has a family history of the condition, whether they have
had any symptoms like unexplained breathlessness, dizziness, fainting or
chest pain, and then use the results to determine whether they need
referral for more tests."
Things are more advanced in
Italy. There, the work of pathologist Gaetano Thiene, who collated
statistical data of sudden deaths in young people from the north of the
country, was enough to convince experts that cardiovascular screening was
vital. As a result, every Italian athlete must undergo assessments and
obtain a fitness certificate before they are allowed to compete in any
sports event.
In America, too, all states,
except for Rhode Island, operate some form of screening programme for
heart irregularities, either at high school or university.
It is this approach that Cox
hopes will eventually become standard practice in Britain. In conjunction
with St George's Hospital in London, CRY has recently established the
country's first sports cardiology testing centre, headed by Professor
William McKenna, a world-renowned expert on SDS who is currently carrying
out research into genetic causes of the illness.
CRY mobile screening units
will also visit schools and sports clubs on request to test young people
between the ages of 14 and 35 at a subsidised cost of £75 per head,
compared with the £300 to £400 usually charged.
"We are making slow
progress but, overall, it seems that we still treat our cars better than
our children in Britain," Cox says. "Motor vehicles are given a
regular MOT, and are not allowed on the road unless they are up to
standard. Yet, at present, there is no structure for testing our children
for a serious condition that puts their lives at risk."
Those youngsters who are
fortunate enough to be tested may be devastated at having their sports
careers cut short if they are diagnosed with HCM or ARVC, but in the long
run, it is a small price to pay.
"I'd rather have a son
who was alive and couldn't play football - and I'm sure that if we'd
known, we could have made Daniel see that," said Terry Yorath after
the death of his son.
"Initially,
it would have crucified him, but, with the intelligence he had, he would
have understood."
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