Dr Steven Cox's response to the BHF estimating 620,000 people in the UK carry faulty gene putting them at high risk of heart disease and sudden death

Dr Steven Cox, Chief Executive of the charity Cardiac Risk in the Young (CRY) comments;

“Statistics and ‘guestimates’ predicting the genetic risk of people dying suddenly from coronary heart disease OR sudden arrhythmic death syndrome (SADS) in young people are two very different things. Whilst the impact of any sudden death is utterly devastating, it is unusual for the “risks” to be grouped together in this way, as often the causes, circumstances, lifestyle factors and ages of those affected are just not the same.

“When grouped together, the numbers seem overwhelming and terrifying.

‘However, what, tragically, is true is the fact that every week in the UK, 12 young (that is aged 35 and under) “apparently fit and healthy people will die suddenly from a cardiac condition. In 80% of cases there will have been no signs or symptoms, which is why CRY believes proactive cardiac screening of young people is so vitally important.

“Of these 600+ deaths a year, some may have a genetic cause – but certainly not all will be inherited. But whatever the underlying cause, it is vital that young people are identified and treated before it is too late and another case of young sudden cardiac death rips apart yet another family and another community.

Dr Cox adds; “Through our research, we know that the numbers of YSCD are not increasing, we are just getting better at identifying the conditions. We are also developing a much clearer picture of how many YOUNG people may be at risk from these silent killers. When you consider that 1 in 300 young people who are proactively screened (using an ECG test, followed by an Echocardiogram) will be identified with a potentially fatal heart condition, you begin to realise why screening is so effective and so important.

And, it is available here and now – for everyone from the age of 14-35, regardless of whether there is a family history of sudden cardiac death (which is the point where most genetic testing will start).

“When CRY was founded in 1995, it was widely believed that the condition, ARVC affected 1 in 5-7 million of the population. Through research (screening and expert pathology) we now know that figure to be closer to 1 in a 2-3,000 – and we are also much better able to identify those at potential risk.

“Research – whether genetic testing or whether working with evidence provided by tens of thousands of heart tracings and pathology reports from the past 20 years – is the answer to preventing these devastating sudden deaths, alongside a UK wide screening programme.

“We must all work together – and that includes the Government – to ensure that the risk and incidence of young sudden cardiac does not grow but instead becomes a rare tragedy.”


For further information, please contact the CRY Press Office on 020 7112 4905 / 0770 948 7959