Statistics

• Accurate statistics are not available but experts estimate that at least 12 young people die suddenly each week in the UK of cardiac abnormalities - sudden death syndrome or sudden cardiac death.

• The incidence of sudden cardiac death in the young is estimated to be 1 in 100,000 per life year. This number is likely to be an underestimate in UK, due to several important reason. There is lack of national systemic registry for sudden death in the young, and most of the reports are derived from deaths of high profile athletes, media reports etc. Also, not all the post mortem examinations are carried out by expert pathologists with a special interested in sudden death in the young. Hence, some of the uncommon conditions are easily missed. Finally, some of the disorders which affect channels in the heart (such as congenital Long QT syndrome, Brugada syndrome, etc) have structurally normal hearts, and hence cannot be diagnosed during autopsy.

• It is estimated that approximately 80% of all non-traumatic sudden deaths in young competitive athletes are due to inherited / congenital structural or functional cardiovascular abnormalities. Hypertrophic Cardiomyopathy (HCM) accounts for 40-50% of all such deaths (Shama et al, Br J Sports Med).

• The majority of young sudden cardiac deaths are due to inherited forms of heart muscle disorder and irregular heart beat. Hypertrophic Cardiomyopathy is the most common of these conditions. Research in the USA by Dr Barry Maron shows that 1 in 500 people have Hypertrophic Cardiomyopathy (Maron, 1995, Circulation).

• In the UK unexplained "sudden death" - where there is no cause identified - is frequently classified as due to natural causes. Experts believe that the majority of these deaths are due to Sudden Death Syndrome or Sudden Cardiac Death. Until the law is changed and coroners have to refer hearts on to specialists we cannot find the true statistics.

• A national programme for systematic pre-participation screening of all young competitive athletes has been in place in Italy since 1971. Research there confirms that ECG testing is the most cost effective way to test for cardiac abnormalities (Corrado et al, 1998, New England Journal of Medicine). A competitive athlete was defined as a participant in an organised sports programme requiring regular training and competition - thus school children would be included in the programme.

• Italian law requires every athlete to have 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. One pathologist, Professor Gaetano Thiene, resolutely collated all statistical data on sudden death in young people in the Veneto region of Northern Italy, and as a result of his research he discovered that cardiovascular screening was effective in identifying individuals at risk. (Corrado et al, 1998, New England Journal of Medicine).

• Sudden death is defined as unexpected death occurring as a result of natural causes in which loss of all functions occurred instantaneously or within six hours of the onset of symptoms or collapse. (Shama et al, Br J Sports Med).

• Those sufferers with symptoms are considered to be the "lucky" ones, as once cardiac conditions are recognised, precautions can be taken, and much can be done to prevent complications and sudden death.