Raising awareness on genetic heart conditions

Ready to respond: Lucinda McNerney with her children Aoife, Dervla and Oisin — in case of emergencies there is a defibrillator at home.

Lucinda McNerney didn’t know she had a genetic heart condition until she suffered cardiac arrest while in hospital for a sore throat. Now she is raising awareness of the importance of screening.

WHEN Lucinda McNerney was 18 years old, she went to hospital with dehydration following a severe sore throat. She wasn’t considered a critically ill patient so it was just sheer luck a nurse happened to be passing when the teenager unexpectedly suffered a cardiac arrest.

Every week in Ireland, at least one person under the age of 35 dies from an undiagnosed heart problem. Lucinda, from Midleton, Co Cork, who is now 41, was completely unaware that she had a genetic heart condition called Long QT Syndrome.

This month the Mater Hospital is trying to raise awareness and funds for the Family Heart Screening Clinic (FHSC) to help people like Lucinda to uncover their condition and learn how to deal with it both for themselves and any future children who may inherit the gene.

“I had no idea I had a heart condition and was blindly going about my business, working for the summer in London while staying with my aunt,” says Lucinda.

“After a strep throat which wouldn’t heal, I was taken to hospital where I was kept in overnight and happened to be in a ward by myself. So it was sheer good fortune that a nurse passed by when I had a cardiac arrest. After spending two weeks in intensive care, I was diagnosed with Long QT Syndrome.”

At this point she had no reason to believe that it was a genetic condition but when her grandmother also suffered heart failure in her early 60s, doctors suggested there may be a link and the family was put forward for testing.

“I had a pacemaker installed and was put on beta blockers — then got on with my life,” Lucinda says.

“But it wasn’t until my grandmother also had a near-miss with her heart that two and two were put together.

“After various tests it was discovered that not only did we both have the same condition but my mother and other family members also had it.

“Luckily, we all responded well to treatment and my life wasn’t affected as much as I thought it would be — but after marrying Frank and becoming pregnant, I realised that the condition may be passed on to my children.”

So while she was pregnant with each of her children (Oisin, 10, Aoife, 9 and Dervla, 3), blood tests were carried out to determine whether she had passed on the gene and these revealed that her youngest was undoubtedly carrying the Long QT gene and her eldest was borderline.

“When I first discovered that the children may be carriers, I was really daunted by the prospect,” she says. “But as the founder of the Long QT Support Group I knew that as long as we were prepared and dealt with the issue as a family, we would cope well.”

“Having lived with it myself since I was 18, I was already aware of the limitations and implications so knew it was important to be prepared — we have a defibrillator in the house and my husband Frank and I are trained in CPR. We have also ensured the children have an alternative for anything they’re not allowed to do. For example, they can’t play competitive sport or go swimming so instead we have introduced them to drama, scouts and music.

“Of course they still get exercise by riding their bikes and playing with a hurley in the garden but because people with Long QT don’t feel unwell, they wouldn’t know their limitations if they were playing a game competitively.”

Getting through a heart diagnosis is dependent on support and information.

“For anyone whose child has just been diagnosed, I would advise them to get as much information as possible from the medical team, join a support group like ours and ensure they are trained in dealing with a crisis — then, just like conditions such as asthma or epilepsy, they need to get on with living their lives.”

Consultant cardiologist Dr Catherine McGorrian says the Mater Heart Appeal is vital as it provides screening for families such as Lucinda’s.

“The Mater Heart Appeal has been running for 19 years and over the last four it has focused on awareness of the tragedy that is Sudden Arrhythmic Death Syndrome (SADS) and raised urgent funds for screening and cardiac care of the families who may be at-risk,” she says.

“As many as one Irish person under the age of 35 may die suddenly and unexpectedly each week from a heart condition, with SADS and cardiomyopathy as some of the causes.

And through the Mater Heart Appeal, families affected by SADS or family-based cardiac conditions can access screening and treatment.”

Mater Heart Appeal

The Mater Heart Appeal, funds the Family Heart Screening Clinic (FHSC), which needs to raise €300,000 annually.

This clinic, which receives no government funding, provides a full screening facility for immediate family members of victims of Sudden Adult Death Syndrome (SADS).

For the month of February, the Mater Heart Appeal is asking people to organise a ‘Red Day’ to raise funds.

¦ For more information see: www.materfoundation.ie or by call 01-830 3482.


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