New figures show that one in six people with a deadly inherited heart condition are only diagnosed after having a cardiac arrest.
Figures released by the British Heart Foundation (BHF) as part of their Your Genes campaign, also highlighted that a fifth (18 per cent) of those are diagnosed after a sudden death in the family.
The initiative aims to raise awareness of inherited heart conditions and focus on the urgent need for better diagnosis of these conditions, so people can identify before a tragedy or life-threatening cardiac arrest.
Fiona Brown from Dundee and her son Ewan have recently been diagnosed with Long QT, an inherited condition that effects the electrics of the heart and can lead to sudden death.
She said: “I feel very passionately about encouraging regular screening to diagnose undetected heart conditions. We are the lucky few who had an incidental diagnosis which has led to myself, my 15-year-old son, my mother, my sister, my nephew and some cousins to be diagnosed and the risk of something happening being managed and therefore reduced through a mixture of beta blockers and crucially avoiding certain common over the counter medications.
“I feel fortunate for this knowledge although the burden of know is at times challenging, especially for my teenage son.”
The BHF estimates around 620,000 people in the UK have a faulty gene which puts them at an unusually high risk of developing heart disease or dying suddenly at a young age.
Each child of someone with an inherited heart condition has a 50 per cent chance of inheriting the same faulty gene. But the majority of people remain undiagnosed. In the UK it is estimated that at least 12 young people – aged under 35 – die every week from an undiagnosed heart condition.
The BHF survey of almost 200 people with inherited heart conditions from across the UK also found that nearly half of people (48 per cent) were not diagnosed with their inherited heart condition until they were over the age of 40.
Prof Sir Nilesh Samani, medical director at the BHF, said: “It is extremely important that family members are offered genetic testing when there’s a history of sudden death or premature heart disease in a family. Once diagnosed, many of these conditions are manageable with medication, and can prevent needless deaths.
“All too often, people aren’t familiar with their family history, or they aren’t aware that a sudden death might be linked to an underlying heart condition.”