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Our programme will raise awareness
that young people with undiagnosed cardiac abnormalities can die suddenly from heart problems.
Contrary to what people are led to
believe Sudden Death Syndrome is not very rare. Research has shown that 1
in 500 people have Hypertrophic Cardiomyopathy (HCM) alone. This makes
this one condition 5 times more common than Cystic Fibrosis.
Accurate statistics are not available
but experts believe at least 8 young (under 35) people die suddenly every
week in the UK
from cardiac abnormalities. Many of these deaths are preventable. Many
have had symptoms that have not been recognised. Some will have gone to a
doctor or hospital and been sent home without even having been given an ECG
test.
The true cost-effectiveness of
saving lives through ECG testing
has not been properly understood.
It has been assumed that ECG testing
is not cost-effective. Unlike other conditions that can result in young
deaths, tragedies from Sudden Death Syndrome are usually
swift. They have not been under surveillance or on medication. What has not been evaluated is the silent suffering of the
families who loose a child in this way.
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Pre-participation screening saves
lives.
Research in Italy compares
statistics of sudden death from HCM with those of the mortality statistics
in the USA from this condition. Studies from the USA have consistently
found that HCM was the most common cause of cardiac arrest in young
competitive athletes (up to 30%). In the Italian study HCM caused only one
death among athletes but caused sudden death in the non-athletic
population with a frequency similar to that found in the USA.
Information can save lives.
Part of the programme will be to
disseminate information and educate about symptoms. Often people think
they have heart problems when they do not. Sometimes they have them but they do not realise their significance.
Identifying those at risk saves
lives.
An essential requirement of the ECG
testing programme will be to fill in a questionnaire recording both
personal and family history. A family history is considered positive if
one or more close relatives has had a premature heart attack. Personal
history would be considered positive if the subject has chest pain or
discomfort, fainting or near-fainting, or irregular heartbeat or
palpitations on exertion, or if the subject had shortness of breath or
fatigue on exertion that was out of proportion to the degree of physical
effort.
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Appropriate information reduces
the risk of anxiety.
Although there is much concern that
an ECG testing Programme will create unnecessary anxiety our experience does not support this. Conversely
it suggests that ECG testing
offers parents the opportunity to discuss underlying worries and reassure
themselves. Many have heard of "Sudden Death Syndrome" and been
unable to identify any further information on what this means.
Pressure on local doctors for
further reassurance and information will be reduced.
Where there has been a young sudden
cardiac death in a community there can be enormous anxiety. These fears
can be allayed by offering ECG testing and appropriate
information.
We need to ECG test all young
people to be fully effective.
Although young sudden cardiac deaths
in sport are those that hit the headlines, most of these sudden
deaths occur outside the sporting arena. Many young sufferers who
have unrecognised symptoms have already 'de-selected' themselves from
participation in sport because their symptoms have not been understood and
treated.
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