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The nine young people
pictured here all died of a mysterious disease known as sudden adult death.
Every week it claims the lives of an average of four people –
making young heart attack almost as deadly as meningitis.
 The victims, normally fit
and healthy young men and women, usually die suddenly when their heart
stops for no apparent reason. Some
collapse and die while playing sport, whole others pass away in their
sleep, all leaving their families devastated and bewildered.
A simple test can detect
the illness, also known as Sudden Death Syndrome.
Alison Cox, who founded
Cardiac Risk in the Young (CRY) after her son, Steve, was diagnosed with a
heart condition, is campaigning for the introduction of nationwide cardiac
screening at school and club level for all young people.
What is this disease and
why is so little known about it? And
how can we stop our young people dying from it?
Sudden Death Syndrome is
an umbrella term used for the many different causes of heart attacks in
young people which can sometimes cause a sudden death.
There are 11 major causes
of unexpected cardiac death in the young.
These conditions include thickening of the heart muscle and
irregularities of the electrical impulses, which upset the rhythm of the
heart.
According to Professor
William McKenna, an expert in cardiomyopathy, hypertrophic cardiomyopathy (HCM)
is the leading cause of sudden death among sports-mad teenagers.
About 10,000 British
people are known to have HCM, but many more are believed to have the
potentially life threatening condition without realising it.
HCM suffers are born with
an enlarged heart muscle that pumps blood inefficiently.
The normal electrical signals which trigger a regular heartbeat are
interfered with and can cause sudden death.
Adolescence is the most
vulnerable time, as HCM develops during periods of rapid growth.
Campaigners are calling
for tests, already routinely used in Italy, to be introduced in Britain
for all people participating in competitive sport at all levels.
Sporty youngsters stress
their heart the most. If they
have an underlying cardiac abnormality they are more likely to be at risk. This is because the heart is the body’s engine and like the
engine of a high performance car, it is more vulnerable if it has to work
extra hard.
Sport does not cause a
heart attack but it can cause a young person to die suddenly by
exacerbating an underlying problem that already exists.
Among those who have been
killed by the disease is the son of one-time Wales football manager, Terry
Yorath, Daniel, who died aged 15, within months of signing for Leeds
United; Olympic cycling hopeful Adrian Hawkins, 22; Everton footballing
prodigy John Marshall who was just 16; and Laura Moss, 13, a brilliant
young international swimmer.
Student Caroline Lucas,
21, was one of the latest victims. The
gifted university student was found dead in her bed by her father after an
evening revising for an exam. She
had showed no signs of illness.
Alison Cox says: ‘It is
often difficult to consider that someone who is apparently young and fit
may be at risk.’ She
continues: ‘There have been a number of reported incidents of mis-diagnosis
culminating in a tragedy that could have been avoided.’
‘In the UK unexplained
sudden death is frequently classified as death from natural causes.
But experts believe that the majority of these deaths are due to
Sudden Death Syndrome. Until
the law is changed and coroners have to refer hearts on to specialists, we
cannot find the true statistics.’
In Italy every athlete is
require to get an annual fitness certificate before they are permitted to
participate in any event. Sports
clubs and schools have to take responsibility for their students’
fitness to participate.
After research, Italian
pathologist Gaetano Thiene discovered that cardiovascular screening was
effective in identifying individuals at risk.
Professor McKenna leads a
specialist team at St George’s Hospital, South London, which is
searching for the gene responsible for causing HCM.
If one parent carries
this gene, a child has a 50% chance of inheriting the condition.
Post-puberty is often the
time when the condition strikes. Symptoms
to watch for include breathlessness, palpitations, dizziness and fainting
spells. The severity of
symptoms varies from person to person and some sufferers appear never to
have any symptoms at all.
It is important to be
aware of the sudden death of any other young person in the family as some
of the conditions can be genetic.
If there is a family
history it is crucial for any children or siblings to be regularly
screened and treated if necessary.
A simple way to diagnose
cardiac abnormalities is by having an electrocardiogram (ECG) test which
records the electrical signals from the heart.
The test takes a few minutes and dos not hurt.
It is a simple, cost-effective way of picking up most – but not
all – young people at risk.
Another test is an
echocardiogram which is an ultrasound test designed to look at the valves.
It is possible to hear the sound of the moving blood and get a
guide to muscle thickness and size of the chambers of the heart.
The disease can then be
controlled with drugs, regular check-ups and in a small number of serious
cases, an implantable defibrillator or pacemaker to shock the heart back
into normal rhythm if necessary.
Although most people who
have the disease live normally, Alison Cox believes ECG tests should be
made available to all adolescents and athletes.
She says: ‘We know that more than 200 people are dying each year
as a result of this. But that
figure is just the start. A
lot of deaths are incorrectly attributed and there is a lack of awareness
in the medical profession about the disease.’
‘There
is no need for people to panic. These
deaths are not common, but they are happening.
Parents need to be aware of the symptoms and how they can be
tackled. It sends shivers up
my spine every time I hear a young person has died.
These children are out future and we can’t afford to lose them.
It is high time the Government funded some serious research.’
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