‘It’s very hard to hear you carry the gene for a potentially deadly heart condition’

Jeanette and her mother Una
Jeanette and her mother Una

One in five people with deadly inherited heart conditions are only diagnosed after the loss of a loved one. We hear from one Belfast woman who only discovered she was at risk after the sudden death of her beloved brother

Joe Burns (23) from North Belfast died in July 2014 after collapsing at his parents’ home.

Joe Burns who died from a genetic heart condition

Joe Burns who died from a genetic heart condition

The popular barman at The Chester Bar was a fit and healthy boxer who trained regularly at the gym. The day after his tragic death his girlfriend Sinead discovered she was pregnant with their daughter Bella who is now two years old.

The young man’s family spent months not knowing how their son and brother died. They were referred to the inherited heart conditions clinic in Belfast for genetic testing.

They have since learned Joe’s mum Una and sister Jeanette both carry the faulty gene for Long QT an inherited condition that can cause heart rhythm disturbances. Left undiagnosed, it can cause sudden death where someone has an unexpected cardiac arrest.

Joe’s sister Jeanette O’Neill said: “When Joe died our family was absolutely devastated. He was the only boy in our family and everyone just loved him, he was so well known in north Belfast and after his death so many people contacted us to say what a gentleman he was. He made such a big impact on so many people.

“We didn’t know what had caused his death and it was hard dealing with that because we didn’t have any answers.

‘‘We were referred to the inherited cardiac conditions service in Belfast and after tests we discovered that my mum Una and I carry the faulty gene for Long QT so it is very likely that is what Joe died from.”

Long QT syndrome causes an electrical disturbance to the heart and puts those affected at risk of having a dangerous heart rhythm. Some people experience no symptoms at all but others may faint or collapse. In some cases, LQTS can cause sudden death.

“It’s very hard to hear that you carry the gene for a potentially deadly heart condition but thanks to the testing we now know we have this gene and can be monitored.

‘‘Our family have dedicated ourselves to raising money for BHF (British Heart Foundation) since Joe’s death because we want to fund the research that will save lives. Last year we ran the Belfast Marathon and will do it this year we don’t want any other family to suffer like ours has.”