Coping With Sudden Loss of Life

Irish Independent Tabloid-Health & Living Supplement
Irish Independent


SADS has claimed many young Irish lives, writes Sarah Breen

In June 1996, Peter Greene finished his Junior Certificate exams and went out to celebrate with a round of golf. The apparently fit and healthy 15 year old came home, went to bed and was dead less than 24 hours later.

“Peter was the youngest of four children,” says Peter’s father, Michael Greene.

“He was full of life and loved sport – sailing particularly. He also played rugby.  He was a bit of a class jester but a perfectly good student. Subsequently we found out that he scored highly in his Junior Certificate”.

On the day he died, Peter was excited to wave goodbye to a stressful year and herald the start of his summer holidays.

“The day Peter finished his exams, he went out playing golf with some of his friends,” says Michael “He came in, said he was tired and went to bed.  I was away on business that night but my wife Marie heard him getting up at about 3.30am.  

“He got sick and told her he couldn’t see and that he had a terrible pain in his chest, so she rushed him in to Beaumont Hospital”.

Within an hour, Peter was dead. “At that time there was very little known about this condition, by the public or indeed by the medical profession”, says Michael.

His cause of death was established as myocarditis, which is a virus that attacks the lining of the heart.  

Afterwards we discovered it was a bit more complicated than that.”

Sudden Arrhythmia Death Syndrome (SADS) is an umbrella term for all the electrical conditions that can cause sudden cardiac death in young people, although it can happen to older people too.

“Between 60 to 75 people under the age of 35 die in Ireland every year as a result of sudden cardiac death,” says Dr Deirdre Ward, a consultant cardiologist at Tallaght Hospital. “Perhaps half of them are due to SADS, and the rest are down to muscle disorders and things like congenital heart disease.”

“I heard a lovely description about the impact of a child’s death on a family the other day by a man in New York,” says Michael.  “He said that if your parents die, you’re an orphan; if your spouse dies, you’re either a widow or a widower; but there’s no word that can describe the death of a young person.”

Following Peter’s death the Greenes began looking for answers as to what may have been the root cause.  

“Marie’s questions led her to a charity in the UK and because of her background in social work, she was invited to do a programme in Warick University on supporting and counselling families who were affected by this condition.  We then decided to set up our charity, Cardiac Risk in the Young (www.cry.ie). E set up ourselves three objectives to; increase awareness of this condition among the public, to offer support to families who were either affected by the death of a young person or who had somebody living with the condition, and to develop a cardiac evaluation programme here in Ireland.”

Peter, a healthy and fit 15 year old, went to bed and was dead less than 24 hours later.

In 2004, the sudden death of footballer Cormac McAnallen brought SADS conditions into the spotlight.

The 24 year old Tyrone captain was at the peak of physical fitness when he was found dead in his bed.

“The conditions that cause SADS have only really been described since the 1990s,” says Dr Ward.

“And it’s only been in recent times where a family would accept that a young person could die suddenly. Doctors would come up with lots of other potential reasons for the death, like acute pneumonia, that might distract from the true cause.

“It’s really only since Cormac MacAnallen’s death that people have started to accept that young, sporty people can die suddenly from a heart condition.

Before then, there was an expectation that was probably due to drugs or something self-inflicted rather than something they were born with”.  After knocking on a lot of doors, in 2006 Michael and Marie Greene and CRY were eventually approached by Dr David Mulcahy, a cardiologist at Tallaght Hospital, with a proposal to develop a centre for cardiac screening in Ireland.

“The Centre for Cardiovascular Risk in Young persons at Tallaght Hospital officially opened in early 2007,” says Michael.

“We receive no government support but provide free services like screening, a family support group and a qualified psychotherapist, which is very important, particularly for families with young children.”

Cardiac screening is one way to prevent sudden cardiac death in the young and it is one of the most valuable services offered by CRY.  Although screening can be invaluable in a family where one member suffers from a SADS condition, it’s just not viable to have the general population tested.

“Screening is not perfect or guaranteed to get a result”, says Dr Ward. “First of all, the conditions are relatively rare in the general population and also they can be very difficult to detect. It’s about finding a test that can correct identify one of these conditions, and finding the right time to do it because some of them won’t be present at birth but can develop over time”.

“Since peter’s death, the whole family has been screened for SADS conditions but there’s nothing there,” says Michael.

“We now think he died due to a genetic condition and not a virus but we still don’t really know.  Even knowing what we know today, we would probably have still lost him.  The truth is, you can have the condition and be monitored and you can still die from it”.

For more information on Cardiac Risk in the Young and how you can support its upcoming Fashion Show and Luncheon (March 22) and Rugby Lunch (March 8) see www.cry.ie.


 

 

 

 

It’s Onwards and Upwards

Woman's Way

February 25, 2013

Cormac Ryan recaps on an eventful year and why he’s raising awareness of sudden cardiac death

By Sinead Ryan

 

From an early age Cormac Ryan always had a hurl in his hand but it wasn’t until he was 16 years old that he was put in goal for the first time … Fast forward a few seasons to September 2011 and he was playing in the field of dreams – Pair an Chrocaigh in an All Ireland Minor Final with Dublin.

Unfortunately Dublin weren’t firing on all cylinders that day and Galway stole the show.

“Reaching the All Ireland Final was an unbelievable experience, I was fit and healthy or so I thought, I was playing in one of the best stadiums in the world against some of the best players in Ireland,” says Cormac.

“Little did I know that the next few months would be one of the worst times of my life.”

After the county hurling finished in the September 2011, Cormac continued to play with his club Whitehall Colmcille. He had felt unwell all week prior to his next club game and with his asthma and the cold weather he thought it was acting up. Throughout the game, Cormac felt weak but thought nothing much of it. However, with 10 minutes left on the clock, Cormac collapsed. He was brought off in an ambulance to Tallaght Hospital where they checked his health and advised him to increase his inhaler but then sent him home.

Over the next few months, Cormack’s health deteriorated, he was constantly tired and when he went training he would get pains in his chest. This is when Cormack’s father Gerry intervened and decided to seek further advice.

“Dad knew something was wrong and he asked a family friend who was a consultant in Beaumont to do some cardiac tests. I was given a heart monitor to wear for 24 hours and before I knew it I was getting phone calls from the hospital to go straight into them.”

Cormac was rushed straight into the triage nurse and was hooked up to different machines within minutes. In the 24 hour period that they had monitored Cormac they had found numerous flatlines. “The scariest part was they found a period of 5.1 seconds when my heart wasn’t working when I was in the hospital. I was eating my breakfast and I didn’t feel a thing”.

Over the next few days Cormac’s life changed forever when the doctors told him devastating news. “First I was told that sport would be out of the question in the future and then I was told that I needed an operation. They implanted the pacemaker under the muscle, buried it quite deep, which means it has plenty of natural protection from the muscle.”

In order to get back to the norm or as normal as possible Cormac decided to set up a fundraising cycle to collection donations for CRY charity, the Irish Heart Foundation and the Cormac McAnallen Trust.

“When I first told my parents I wanted to cycle, 1,100km around the coast of the country they thought I was mad. But these days the only way to get noticed is to do something that’s a bit different. There are four of us taking on the challenge – myself, my brother Sean and my friends Niall O’Donnell and Kevin Conway.

At the moment, Cormac is back training slowly and trying to get his life back to the way it was.

“I am lucky to be alive and that is what I say to myself everyday.

“I could have easily drifted off in my sleep one night after playing a match or just collapsed on a pitch like so many others.

“Now I want to use my condition the best way possible and raise awareness so events such as Cormac McAnallen and Ciaran Carr’s deaths never happen again.”

Over 5,000 people suffer sudden cardiac death (SCD) in Ireland each year, but the vast majority of these are older people who have hardening of the arteries and suffer a true medical heart attack.

Much less commonly, SCD affects young people under 35 years, on average between 60 to 80 people per year between the ages of 1 to 35 years. Dr. Deirdre Ward form CRY charity and Tallaght Hospital states that hardening of the arteries is much less common in this age group. In about 50 per cent of cases that cause is due to a genetic condition which may run through the family.

“From what Cormac describes, his case was a slightly less common problem with a slowing down or malfunctioning of the electrical activation in his heart.

“In Cormac’s case, it seems his was intermittent – not present on every heart tracing, but perhaps becoming more frequent as the months passed, and picked up on a longer heart rhythm recording. This would be a relatively uncommon finding, as many of the conditions that can affect young people will be detectable on a resting ECG.”

For now though, 2013 is a new year and Cormac will try and start living his life again “I know that I have to be careful with what I do but I am back training on the bike and going for check-ups regularly so it’s onwards and upwards!”


 

Jacqui Hurley and Daniella Moyles Cry Out for Mini Marathon Support

Medical Independent
Thursday 14 February 2013

Medical Independant Photo

RTE sports presenter, Jacqui Hurley and model and TV presenter, Daniella Moyles, joined the Lord Mayor of Dublin, Naoise O’Muiri, at the Mansion House recently to encourage women to sign up for this year’s Flora Women’s Mini Marathon in aid of Cardiac risk in the Young (CRY). The Charity hopes to double its numbers this year and raise €250,000 to support the free screening service the charity provides to diagnose heart conditions that can lead to sudden cardiac death.

This year CRY has launched a new Facebook page called CRY Dublin Mini Marathon, which will supply tips, advice articles and couch to 10k fitness plans.

Jacqui Hurley has been a strong supporter and patron of CRY for a number of years and last year undertook Sean’s Bucket List in memory of her brother Sean, raising huge funds for CRY and the Young Rider Development Fund.

Commenting at the photo call Jaqui said, “CRY is an excellent charity that works hard to ensure that sudden cardiac deaths are avoided by providing free cardiac screening for anyone with worrying symptoms as well as support for family members who have lost someone to sudden cardiac death”.

All participants must enter on the official marathon entry form and those who have entered and would like to run for CRY can call Lucia on 01 4525482 or email This email address is being protected from spambots. You need JavaScript enabled to view it. This e-mail address is being protected from spambots. You need JavaScript enabled to view it to receive their sponsorship pack.

 


 

Calls for 'Priceless Resource' of Heel Price Test Results to Be Saved

Irish Times - Health and Family
Tuesday 5 February 2013

Ronan McGreevy


The Government faces strong medical opposition over its plans to destroy the Guthrie cards.

Since 1966 every child born in the State has been subject to a heel price which is taken shortly after birth.

The National Newborn Bloodspot Screening Programme, to give it its proper name, screens for six rare genetic diseases. These are Phenylketonuria (PKU), Homocystinuria, Maple Syrup Urine Disease, Classical Galactosaemia, Congenital Hypothyroidism and, most recently, Cystic Fibrosis.

The results are stored on what are known as Guthrie cards which have been kept in the archives at the Children’s University Hospital in Temple Street.

The cards held between 1966 and 1984 were destroyed by water contamination but those since 1984 remain, approximately a million in total.

The Government now intends to destroy all the screening cards between 1984 and 2002 on foot of a ruling in 2009 from the Data Protection Commissioner that the retention of such cards is in breach of privacy regulations.

The Department of Health and the Health Service Executive have given the public until March 31st to consent to their records or those of their children being kept. Otherwise, they will be destroyed. Each year, cards that are more than 10 years old will be destroyed.

As the deadline approaches, the issue has become an emotive one with many medical professionals decrying the proposed action as unnecessary and a waste of potentially valuable biomedical data.

IF THESE RECORDS ARE DESTROYED, IT WILL BE THE WORST ACT OF CULTURAL AND SOCIAL VANDALISM CARRIED OUT BY OUR GOVERNMENT SINCE 1922

Opponents say the information could be used as a future resource to detect illnesses as diverse as sudden adult death syndrome and haemochromatosis. The strength of feeling about the issue was illustrated in a letter to this newspaper by professor of genetics at Trinity College Dublin, David McConnell last week.

Prof McConnell likened the future destruction of the record to the “modern equivalent of burning the Customs House, or destroying the birth certificates of all born in Ireland”. He said it would be a “disaster”.

“If these records are destroyed, it will be the worst act of cultural and social vandalism carried out by our Government since 1922,” he concluded.

Health Risks

He explained the Guthrie cards could be valuable for individuals and collectively.

“It would also allow the health authorities to obtain a more accurate picture of the health risks of the Irish people as a whole, and this would allow us to introduce more valuable and effective health services.”

He cited evidence of one disease, Haemochromatosis (HC), as a disease which the Guthrie cards can be helpful in detecting.

HC is a disease where suffers fail to absorb iron properly. It is particularly prevalent in Irish people for reasons which are not well understood.

Amost one in 75 Irish people is affected by the genetic condition. This was discovered in 1999 with a random selection of 90 Guthrie cards form the archive.

Prof McConnell maintains that modern medical research is identifying a genetic component to so many disease that they amount to a “priceless resource”.

Prof McConnell has supported from the Royal College of Physicians in Ireland (RCPI) who have also called for the data base to be spared.

RCPI president Prof John Crowe said the Department of Health and the HSE’s approach to the archives was “bizarre” and based on questionable legal advice.

He said the Government could resolve the issue by taking a different tack completely.

Instead of seeking consent from those who do not want their records destroyed, they should assume consent unless a person requested that their card be destroyed.

Prof Crowe said the cards form the 1980s were particularly valuable because they provide a snapshot of the Irish population before mass immigration took place.

He maintained that if the Government remains intent on destroying them, they should keep a sample from the 1980s for research purposes. “In our view, common sense and the good of society should take precedence over a narrow interpretation of the law”, he said.

Disease screening

Prof McConnell has also got the support of the Irish Haemochromotosis Association (IHA).

Its chairwoman, Margaret Mullett, described the potential destruction as a “travesty” and said the Guthrie cards should be used to screen for the disease.

For its part, the HSE said it has moved as far as it can to accommodate those who want to keep their cards.

A spokeswoman explained: “We have to comply with the existing data protection legislation. Because there was no legal basis for it to be collected and no consent given at the time, we have no right to retain them.

“For us to retain them would be outside the law. The data commissioner legislation is quite explicit about what we can and cannot do”.

She said great lengths have been gone to accommodate as many people as possible. Those who want to retain their cards or their children’s cards after March 31st should log on to newbornscreening.ie for more information.


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