Steve collapsed to the ground unconscious, half a mile from the finish line of the Cardiff half marathon. A previously healthy 19-year-old, he recovered quickly and blamed the abrupt end to the race on dehydration, but was worried enough to see his GP who referred him urgently to my cardiology clinic. Following some basic investigations I realised that he should not have competed in the race. He has a heart muscle disease (cardiomyopathy) that puts him at high risk of sudden cardiac death (SCD), especially when participating in endurance sports.
SCD in the young is a tragic and shocking phenomenon, which kills around 12 people aged 35 and under every week in the UK. An estimated one in 300 of the general population has an underlying heart condition predisposing them to SCD. With more than ten million people in Europe taking part in endurance sports such as marathons and iron man competitions, it is inevitable that we will hear the news of another young and fit person dying while participating in one of these events. In the younger population, SCD occurs due to structural heart disease, cardiomyopathy, or electrical disturbances of the heart. In older people, the risk is mainly due to coronary artery disease (heart attacks). Up to 80 per cent of SCD occurs in people who were previously free of any symptoms.
These sobering statistics lead us to a conundrum: we are constantly told that exercise is good for us, but given the publicity given to SCD in previously healthy young people, what are the implications for someone who wants to start participating in endurance sports? By far, the benefits of exercise outweigh the risks, but the European Society of Cardiology states that four hours per week of endurance sports are enough to induce electrical and structural changes in the heart, and recommends that anyone wanting to engage in more exercise should consult a doctor beforehand. The impact on the workload of the NHS, especially GPs, will rise if these recommendations are followed.
There are increasing calls made by some doctors, bereaved families and charities such as Cardiac Risk in the Young for the screening of asymptomatic young people for underlying heart conditions. Research shows that mandatory screening of all young people in Italy who participated in sport led to an 89 per cent reduction in SCD. Advocates highlight SCD’s impact on society: these are highly motivated young people, often raising money for charity, who are robbed of many decades of their lives.
Aneil Malhotra, senior lecturer at St George’s Hospital, London, recently conducted a study that screened more than 11,000 Football Association players aged 16 for SCD over a period of 20 years. They all had an electrical recording of the heart (ECG) and a cardiac ultrasound scan (echocardiogram).
There were eight deaths due to SCD: six occurred due to cardiac disease not picked up by screening at age 16. As a result, the FA has increased the frequency of screening of footballers at the ages of 18, 20 and 25. (The other two deaths were in footballers with cardiomyopathy who played in spite of being advised not to.)
Critics of screening raise several concerns: false-positive results lead to unnecessary avoidance of exercise and increased anxiety for young people; the overall incidence of SCD is very small; and it is expensive – the cost of screening more than 11,000 footballers was just under £3m, and it does not pick up all cases.
But for the bereaved parent of a child lost to SCD, the answer is likely to be very different to someone looking purely at the cost and time implications for an already burdened NHS.
I was worried about how Steve would cope with his new diagnosis of cardiomyopathy; at least for now, he has to stop exercising. He said, “I count myself as the luckiest man alive: two people died during the same race – it could have been me.”
Nishat Siddiqi is a cardiologist based in South Wales
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This article appears in the 07 Nov 2018 issue of the New Statesman, Revenge of the nation state