CRY launches its "Life Years Lost…" campaign

This Valentines Day, leading heart charity highlights the tragic legacy of young sudden cardiac death for those left behind

This month (February 2009), the charity – Cardiac Risk in the Young (CRY) – is launching an emotive campaign to highlight the devastating impact of sudden death in young people (aged 35 and under).

The results of a new survey*, commissioned by CRY, show that awareness of sudden cardiac death – that now claims the lives of 12 young people every week in the UK – remains low, with less than half of people questioned (45%) saying they knew about the scale of deaths in the UK.

Over a third of those questioned (38%) said they were not aware that the majority of heart conditions that could cause young sudden death could be identified by a simple test (ECG).

Overall, almost two thirds (62%) of those questioned said they had never had an ECG test. Worryingly, this was lowest amongst the two age groups most ‘at risk’ from young sudden cardiac death with just 17% of 18-34 year olds saying they had had an ECG test.

Spearheaded by the charity’s consultant cardiologist, Dr Sanjay Sharma (Kings College Hospital, London), the timely campaign will focus on the thought-provoking issue of “Life Years Lost…” – a theme that Dr Sharma feels is vital to communicate if the medical community, MPs, young people and the general public are to understand the full scale of this tragic condition that continues to strike “apparently fit and healthy people” without warning.

Dr Sharma says: “We currently estimate that well over 500 young people die suddenly every year in the UK from sudden cardiac death – and that figure could just be the tip of the iceberg. Many of these young people are in their teens and early-twenties – at the prime of their lives. Looking at predicted life-expectancies for the 21st century, we can assume that the majority of these young victims are being robbed of 50 to 60 years of their lives. Poignantly, their families are being robbed of their ‘futures’ and watching them ‘grow up and grow old’.”

The tragedy is that these deaths are not “freak” accidents. They are preventable deaths that could have been avoided if young people – especially those involved in regular sport – were being offered screening and if generally we were all more aware about the importance of understanding the history of our family’s health.”

He adds: “Most conditions that cause sudden cardiac death in the young are rare when compared with coronary heart disease – but the impact of potential life years lost due to these deaths is striking.”

Sudden death syndrome strikes down young people when they are seemingly at the peak of fitness – many of whom were involved in sport. Sport does not cause this problem – but it can exacerbate an existing undiagnosed condition and the high risk group is the young.

It is now widely accepted that screening saves lives. CRY is committed to encouraging greater access to its cardiac testing for all groups and individuals (but especially those involved in sport at ‘grass-roots’ level) to detect conditions that might otherwise go undiagnosed.

Chief Executive and Founder of the charity, Alison Cox MBE, says; “Valentine’s Day is traditionally a time for being with your “beloved” – but for the thousands of families who have been affected by young sudden cardiac death, it all too often becomes a time for thinking about the future that has been so cruelly taken away when you remember the loved one that you have lost.

But, as well as focusing on ‘life years lost’ we must also use the opportunity to look ahead to our vision of promoting awareness among health professionals and parents and increasing access to screening across the UK.”

CRY works with and supports hundreds of families across the UK who have been devastated by this tragic condition and who are willing to share their experience to help raise awareness of the charity and of the importance of screening.

CRY is also asking its patrons and celebrity supporters to post a “love letter” on its website, stating why CRY has a special place in their heart and how they value the work the charity does, raising awareness and supporting families across the UK.

ENDS

For more information or to arrange an interview with a CRY family or celebrity supporter, please call: THE CRY PRESS OFFICE: JO HUDSON or HEATHER CHURCHOUSE ON 020 8786 3860 / 0770 948 7959: jo.hudson@trinitypr.co.uk

To find out more about the programme of CRY ECG testing across the UK or watch a video of CRY Patron David Walliams being tested go to www.c-r-y.org.uk/ecg.htm

Notes to editors:

*ICM interviewed a random sample of 1004 adults aged 18+ by telephone between 28th 29th January 2009. Surveys were conducted across the country and the results have been weighted to the profile of all adults. ICM is a member of the British Polling Council and abides by its rules. Further information at www.icmresearch.co.uk

CRY was founded in May 1995 to raise awareness of Sudden Arrhythmia Death Syndrome (SADS). As well as campaigning and lobbying and the provision of its subsidised cardiac screening programme for young people (35 and under), the charity also provides counselling support to bereaved families and individuals who may be diagnosed with a life-threatening condition.

CRY works closely with a number of MPs to try and improve awareness of sudden cardiac death in young people. This has resulted in the creation of the CRY All Party Parliamentary Group (currently 113 members), and the proposal of the Cardiac Risk in the Young (Screening) Bill which was the catalyst for new NSF guidelines for Chapter 8 on Arrhythmia and Sudden Cardiac Death.

Sudden Cardiac Death (SCD) is an umbrella term for a number of different heart conditions that affect fit and healthy people which, if not treated can result in a dramatic and / or spontaneous death. In about one in 20 cases of sudden cardiac death, no recognised cause can be found – even after post-mortem. This is then called Sudden Arrhythmic Death Syndrome (SADS). Many experts are now claiming that the actual number of deaths recorded could just be ‘the tip of the iceberg’ with many causes being wrongly recorded as asthma, epilepsy or even drowning.