Cork lunch to hear reality of living with Long QT Syndrome

By June Shannon Heart News   |   30th Oct 2019

Pictured (L to R) at the launch of the 2019 Cork Heart Lunch in aid of the Irish Heart Foundation were: Lucinda McNerney, Southern Support Manager with the Irish Heart Foundation, who together with two of her three children is living with LQTS; Mr Kishore Doddakula, Consultant Cardiothoracic Surgeon at Cork University Hospital;  and Anne Riordan, Regional Manager, Irish Heart Foundation.

The Irish Heart Foundation’s annual Cork Heart Lunch takes place on Friday 08th November in the Maryborough House Hotel.

“Nobody understands unless they have been there. I would shout up the stairs to check if the kids were up … any delay … you would think… are they still breathing? “

This is the reality of living with Long QT Syndrome (LQTS) , an inherited defect in the heart’s rhythm which causes fainting spells, dizziness and palpitations. In worst case scenarios, the condition causes seizures and sudden death.

Lucinda McNerney, Southern Support Manager with the Irish Heart Foundation, who together with two of her three children is living with LQTS, is due to address the annual Cork Heart Lunch in aid of the Irish Heart Foundation on Friday 8th of November in the Maryborough House Hotel in Douglas in Cork.

The event will be hosted by Mr Kishore Doddakula, Consultant Cardiothoracic Surgeon at Cork University Hospital and will feature a 3-course lunch, musical entertainment, an auction, raffle prizes and much more. Speakers include RTE’s Lilian Smith who will interview Lucinda about the realities of living and parenting with LQTS.

Lucinda had a cardiac arrest at the age of 18 and was diagnosed with LQTS. Despite faced with living with a pacemaker and taking lifelong medication, Lucinda didn’t let it hold her back and she went on to meet her husband and have three children, two of whom were subsequently diagnosed with the same condition.

It is estimated that one in 5,000 people have LQTS and their children have a 50 per cent chance of inheriting it.

“ Nobody understands unless you have been there. When we would shout up the stairs to check if the kids were up … any delay … you would think… are they breathing? When you get a call from the school your first thought is have, they collapsed? ”

Lucinda McNerney, Southern Support Manager , The Irish Heart Foundation,

“As strange as it might seem it felt like I had won the lotto once our gene was found – it was discovered that we had LQTS. This now meant we could definitively test our kids. Two of my three children have this condition my eldest and youngest and both are now on lifelong medication. We have an AED in our house, and I take it everywhere with me, they are doing well.”

Lucinda set up the national LQTS support group to help others diagnosed with the condition and to advocate for screening and adequate services for those living with an inherited cardiac condition.

Through her work she has supported numerous families and parents many of whom share a familiar fear of losing a child to sudden cardiac death.

“Nobody understands unless you have been there. When we would shout up the stairs to check if the kids were up … any delay … you would think… are they breathing? When you get a call from the school your first thought is,  have they collapsed?” Lucinda explained.

The Long QT Support Group helps families to simply walk through these frightening thoughts, affirm they are normal but to facilitate a way that the person with the condition and their families can go on to live full lives.

Lucinda has recently joined the Irish Heart Foundation to help develop support services in the Munster region and she aims to ensure anyone irrespective or their age or cardiac diagnosis, has access to support and information in the Munster region.

You can help with this aim by attending the Irish Heart Foundation’s 2019 Cork Luncheon on the 8th of November.

Tickets can be purchased on Eventbrite or from the Irish Heart Foundation’s Cork office on Tel: 021 4505822

For more information please see here 

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awareness Cork Cork Luncheon 2019 fundraising heart disease Long QT Long QT Syndrome screening

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