Faulty gene a ticking time-bomb for thousands warns heart charity
Undetected heart conditions can be deadly and devastate families, often by taking away loved ones without warning.
Last updated 1st Feb 2017
Undiagnosed heart conditions are killing one young person in Northern Ireland every month. And the British Heart Foundation says thousands more are unkowingly at risk because of a faulty gene.
The heart research charity estimates that around 17,500 people in Northern Ireland are living with a faulty gene that puts them at high risk of a heart attack at a young age or sudden death. In addition to these thousands there are more people at risk of dying prematurely because of other non-genetic heart defects including abnormal heart rhythms.
For many families, the first sign there’s a problem is when someone dies suddenly with no obvious cause or explanation.
Hilary Niblock from Lisburn lost her son Kris on 18 June 2014 just days before his 21st birthday.
“I had picked Kris up from his job in Tesco. It was a lovely evening so we were getting ready to have a barbecue and Kris was out working on his friend’s car. His friend came running in and said Kris is lying at the side of the car. We thought maybe he’s been electrocuted. The ambulance came and rushed him to Lagan Valley Hospital.
“When he got there they must have worked on him for two to three hours but there was nothing more they could do. Nothing can prepare you hearing that. I just kept thinking this can’t be happening.”
The Niblock family were all tested for an inherited heart condition but later discovered Kris’s death was due to an electrical fault in his heart.
“I know now there was nothing we could have done but you’re tortured by thoughts of what if? What if we had known? Kris was my youngest and was the wee boy I had always wanted. I always felt he was someone special. Everyone who knew him talks about his big smile. He was so quiet and unassuming and would have done anything for anyone.
“I don’t want any family to go through what we’ve gone through. More research is needed so no family has to suffer the loss of their child so unexpectedly.”
The BHF says funded research has helped to pioneer technology like implantable cardioverter-defibrillator ICD implants which treat a dangerous heart rhythm as well as discovering many of the faulty genes that cause inherited heart conditions. But the charity says more research is urgently needed to better detect and treat these conditions.
Karen McCammon, specialist heart nurse with BHF NI said: “The reality is that there are thousands of people across Northern Ireland who are unaware that they could be at risk of sudden death because from the outside they are perfectly healthy. There are people out there who kiss their loved ones goodnight or goodbye in the morning and don’t wake up or don’t come home.
“Thanks to the public’s kind support, BHF-funded researchers have made major discoveries in these frightening heart conditions but we urgently need to fund more research to better understand these heart conditions, make more discoveries, develop new treatments and save more lives.”
The BHF has launched a new television campaign to raise awareness of the sudden devastation caused by heart disease. In the advert, a bridesmaid suffers a cardiac arrest due to an inherited heart condition on her sister’s wedding day.
Chris Allen, senior cardiac nurse at the British Heart Foundation charity, said: Heart failure is a cruel and debilitating illness affecting more than half a million people across the UK.
The number of heart failure hospital visits has increased by more than a third in the last ten years as more people are diagnosed with the condition, with sufferers in severe cases often having poorer survival rates than many cancers.
Currently, heart failure is incurable and difficult to treat, which may explain why survival rates for the condition are not improving.
This study helps to highlight the urgent need to better manage patients so they survive longer following their diagnosis.''