It has become a familiar story to every Irish person: The tragedy of a seemingly perfectly healthy

young person being killed by a heart condition that in many cases they were unaware of. Often occurring in the middle of or straight after physical activity, it has been called Sudden Adult Death Syndrome, but can also be referred to as Sudden Cardiac Death.

Twelve young people die in such circumstances every week in the UK and there are between eighty and a hundred cases every year in Ireland. However it is difficult to give exact numbers as some may appear to be cases of drowning or car accidents while asthma and epilepsy appear to be the causes of others.

The case of Cormac McAnallen was undoubtedly one of the more high profile cases that brought a widespread problem to the nation’s attention. A dedicated footballer, Cormac McAnallen had won provincial and All- Ireland titles with Tyrone.

Appearing the picture of health and fitness, the country was stunned when he died suddenly in his sleep on 2 March 2004. A terrible loss, heartfelt tributes came from his manager Mickey Harte, various other GAA figures and even President Mary McAleese.

“The problem is the healthiest of young people can die from something they never knew they had,” Cormac’s mother Bridget explains.

“Young people can die suddenly in road accidents and other accidents and you try to prevent them where possible. There are very few conditions that can kill as suddenly and this is one that has no preventative measure, you can’t say ‘do this and you’ll be alright’.

“People don’t get months, they don’t get weeks, they don’t get days, they don’t get hours, they only get minutes to be saved. You won’t be saved unless someone close has a defibrillator.”

Cormac’s death, along with that of John McCall who collapsed while playing for Ireland in the Under- 19 World Cup and those of other sports people brought the matter to the population’s attention, but also brought about one of the popular misconceptions about the topic.

“The message has actually got across too well in one respect,” Bridget reveals. “While we want people to realize they could have these conditions even if they look fine and feel fine, there is this myth that they just affect sportspeople. That is definitely not true. In fact the majority of these deaths happen to ordinary people that don’t play sport or are certainly not major sports people.”

Seaghan Kearney (centre, front) with (clockwise) Alan Brogan, Rob Kearney, Bernard Brogan and RTE’s Kathryn Thomas

The cause of Cormac’s death was revealed to be long QT syndrome which is a genetic heart condition where an irregular heartbeat may lead to palpitations, fainting and sudden death. With many different varieties, long QT syndrome is the most common cause of sudden cardiac death while hypertrophic cardiomyopathy is another big cause. “There may well be triggers but that’s not well known yet,”

Bridget discloses.

“A lot of people who have these conditions don’t know they have them and they may have no symptoms. They could just suddenly have an attack in the middle of the night, when they are having their lunch or when they are playing sport.

“Vigorous exercise may bring on an attack in some cases but not in them all and that is a mistake that a lot of people make. The only way you can do anything about long QT syndrome and similar conditions is to screen young people, especially if there is a family history of heart trouble.”

Like Cormac, many of the young people who suffer Sudden Cardiac Death display no prior symptoms but Bridget tells me the signs are not always picked up on.

“You might think it would be obvious to people if they had symptoms but very often the symptoms are dizziness, chest pains, fainting or something as simple as being abnormally out of breath. Very often symptoms can be overlooked, even by doctors who wouldn’t suspect a heart condition in an eighteen-year-old.”

With the support of her family and some members of the Tyrone County Board, Bridget set up the Cormac Trust to raise awareness of sudden cardiac death in young people and its causes, to promote cardiac screening for young people, especially athletes, to support those effected, to provide lifesaving defibrillators

for sports clubs and, most importantly, to fund research into the subject.

Just last year, Seaghan Kearney collapsed in the middle of a relaxed five a side soccer game. His heart dead, his friends and team mates had only minutes to locate the nearby defibrillator and shock his heart back into life. Seaghan thanks his friends’ quick thinking and alertness for the fact that he is still with us, but thanks something else, or someone else, ultimately for his life.

Cormac McAnallen

“It was the Cormac Trust that saved my life,” the 31 year old teacher tells me. Being one of the only five people to survive a sudden cardiac arrest during sport, his gratitude for being alive is audible in his voice and probably what compels him to also raise awareness of the issue.

“You realise how lucky you are. Unfortunately there haven’t been many survivors but the more awareness that is out there, the more lives may be saved,” he adds. Seaghan has been heavily involved with the Mater Hospital’s ACT campaign which has been endorsed by several high profile sports people including Rob Kearney, Tommy Bowe, Bernard and Alan Brogan and Seán Óg Ó hAilpín.

ACT is an appeal for sports clubs to have a defibrillator and follows these rules: Make sure it is Accessible, make sure it is Charged and make sure people are Trained how to use it.

“Having such names give their time really helps the cause,” Seaghan enthuses. “I’m just another Joe Soap but when you see Alan Brogan or Rob Kearney who are big names, people take more notice and pay more attention to the condition.”

Before his collapse, Seaghan had always been fit and healthy, playing sport to a high level without ever having any complaints of any kind. He remembers very little of the horrifying episode: “Because my heart stopped for approximately four minutes, my vital organs stopped receiving oxygen. I actually don’t remember anything from the day because the short term memory was wiped. From talking to people I know I was in good form and it was just a normal Monday.”

The Mater Hospital is not the only major screening clinic, with one also open at Tallaght Hospital. Rugby brothers Leon and Owen Cullen were present at the Tallaght launch to emphasise the importance of testing in the case of a family history. Both clinics are going very strong but don’t get funded by the government and must always raise their own funds.

“The Mater Foundation do some Trojan work,” Seaghan points out. “These conditions are hereditary, so if it does strike in the family, the likes of the Mater Foundation know what they’re looking. While general screening may miss something, if you know the particular condition that you’re looking for, you can find it.

“I’ve had family members screened and thankfully they all showed up okay but I know other families who may have lost a loved one and a similar condition has shown up so they can be warned ‘you have the same condition and you can take certain precautions’.

The likes of the Mater Foundation do really important work in this area and should be supported by the government.”

Both Bridget and Seaghan are keen to point out that, while screening can be hugely effective, is still fallible. This can be illustrated by the case of Ross McCann who was about to embark on a regime to get himself back into shape when he decided to get screened.

With nothing coming to light in his screening, Ross was told everything was fine only to collapse in he gym while working out. Much like Seaghan, it was quick thinking gym staff that brought him back to life with the defibrillator that was on hand. Is it an Irish problem, or do we only hear of the Irish cases?

“The problem is not confined to Ireland and Britain,” says Bridget. “It may well depend on the genetic make-up of a population which conditions are common. There are 3,000 deaths in America every year.”

“Screening has been taking place in Italy for many years. Deaths of prominent sports people has brought more but I do believe there is very little awareness in most countries in Europe.”

Indeed, it has affected soccer players like Marc Vivien Foe who died on the football pitch in 2003, shocking the sporting world.

More recently, Antonio Puerta, a rising Spanish star, died of cardiac arrest at the age of 22 while playing for Sevilla in 2007. Real Madrid’s Ruben de la Red also suffered a similar episode during a game and never returned to play. As a result of such tragedies, a defibrillator is a legal requirement at all professional Spanish matches, as well as any sports centre in the country.

There have been great strides in the right direction but Bridget thinks we can still do more: “I would like to see mass screening in schools as the onset of these conditions occurs around the beginning of adolescence. The screening is quick, painless and could be very cost effective.”

Seaghan would like to see government doing something about it. “I would like to see legislation introduced whereby defibrillators would become compulsory in all public buildings, similar to fire escapes and fire extinguishers.”

A young person dies from these conditions each week. Cork GAA player Kieran Hegarty collapsed after a training session in May this year which tells us, in spite of the good work already done, the message must go further still. From all accounts, Cormac McAnallen was a selfless individual and a teacher who would often go the extra mile. It seems a fitting legacy that a trust in his name now gives life back to people with the same condition, even if it is too late for him.

• For more information on sudden cardiac death, you can contact: The Mater Foundation,

53-54 Eccles St,Dublin 7. Tel: (01) 803 4354. Fax: (01) 803 4417. Email: contact@materfoundation.ie and The Cormac Trust, C/O 61 Main St., Benburb, Dungannon, Co. Tyrone. BT71 7LG. Email:

info@thecormactrust.com

David Hennessy – The Irish World – 19th November 2011

Once again this year a Christmas memorial service will be held to remember young people who have tragically lost their lives to Sudden Cardiac Death.

This year there will be one service only, in Dublin.

The service will be held on Sunday the 4th of December at 1pm in Monkstown Church of Ireland Parish Church, Dublin. The church is on the Monkstown Road which is on the main Dublin to Dun Laoghaire Road.

During the services there will be a candle lighting ceremony in memory of those we have lost. If you would like to, please bring along a framed photo of the person you have lost. We would like to stand the photos on a table in the church.

Christmas can be a difficult time for those of us who have lost loved ones. This service gives us the opportunity to remember those we have lost and meet others who have suffered a similar loss.

Please come along with your family and friends.

If you have any questions about the service, please ring Monica Martin on 086 204 3932.

Sudden Cardiac Death (in the young) Support Group

Saturday 12th November 2011 in

The Greenvale Hotel, Cookstown

All proceeds go to The Cormac Trust

Admission is £10 including light supper

The quiz will be followed by a disco with DJ Frankie Gallagher!

To view results, sorted by race times, right click and save link below (the file is a MS Excel spreadsheet)

10RaceTimes

To view results, sorted by race number, right click and save link below (the file is a MS Excel spreadsheet)

10kRacenumbers

It is estimated one person a week dies from Sudden Adult Death Syndrome (Sads) and Stephen Comerford has timed the awareness drive to coincide with next weekend’s All-Ireland football final.

The 31-year-old wants fans to send 100,000 messages to raise €60,000 for screening programmes and defibrillators for clubs.

He was inspired to act after the sudden death last month of 16-year-old Patrick Dinsmore from south Down.

“To be honest every time I hear of another young sports person dying from Sads it takes me right back to day we lost Gary,” he said.

“If my campaign means that one child will be screened and given the green light or clean bill of health from his cardiologist then the campaign for me will be a success.”

Mr Comerford’s brother died in 1996 aged 15 while playing for his local soccer club in Cork.

The family was later screened and Mr Comerford was himself found to have a heart defect.

The money raised through the text campaign will go to the Cormac McAnallen Trust set up after the sudden death of the young Tyrone star in 2004.

It is hoped the funds will extend screening campaigns around Cork and also allow help pay for defibrillators for clubs in Down and Cork.

A mobile screening service is already being established in Cork with a cardiologist on hand to examine young players.

Cork footballers and broadcaster Micheal O’Muircheartaigh have lent their support to the campaign urging fans to text ‘Sads’ to 53306 (ROI)

From Northern Ireland or UK  text ‘Sads’ to 81108
Read more: http://www.breakingnews.ie/ireland/text-campaign-aims-to-help-sads-sufferers-473265.html#ixzz0zdP3mtx6

10RaceTimes

To view results, sorted by race number, right click and save link below (the file is a MS Excel spreadsheet)

10kRacenumbers

The Forum is an extremely important part of the site and we value your many contributions.

If you have any questions, please email: paul@thecormactrust.com

thank you

Paul

Peter Greene was an active, sporty teenager. So when he died suddenly at the age of 15, his family’s shock and grief were especially intense.

“We lost our son 10 years ago to sudden cardiac death,” explains Peter’s father, Michael.

“There was no history, no warnings, he was a normal healthy young man, sports-orientated, full of the joys of life, and he died without any warning.”

Driven by their son’s memory, Greene set up an awareness and support group, and are now involved in a new initiative in Tallaght Hospital to target cardiovascular disease in young people.

The dedicated unit, due to open in January, will offer potentially life-saving screening for families affected by sudden cardiac death (SCD) and other heart complications in young people.

In SCD, patients die within an hour from the onset of symptoms, explains consultant cardiologist Prof Ian Graham who, along with Dr David Mulcahy, is spearheading the new Tallaght unit in the Institute of Cardiovascular Science.

He estimates that around 5,000 people in the Republic die from SCD each year, and about 60 of those are under 35 years of age.

“In a youg person it’s terribly tragic, it has terrible, devastating spin-ff effects,” he says.

In people over 35, the main cause of SCD is coronary heart disease, or hardening of the arteries, says Graham. In younger people, SCD is often due to abnormalities in the heart muscle or valves, or disturbances in the electrical signals that regulate the heartbeat.

This may stem from infection, congenital heart disease or genetics, depending on the condition, he adds.

High-profile SCD cases in seemingly healthy athletes such as Tyrone Gaelic footballer Cormac McAnallen have raised awareness of the problem, and a recent Task Force report recommended that first-degree relatives of people affected by SCD should be screened.

The new unit at Tallaght aims to target the highest-risk groups.

“There are certain clear warnings. If there’s any history in the family, they do need to be screened,” says Graham, who notes that symptoms on exertion like getting light-headed or fainting or chest pain also need to be taken seriously.

He adds that people can access the unit through their GP or through a support organisation such as Cry. Cardiac screening is also available at Dublin’s Mater Misericordiae Hospital.

“Everything is welcome and it’s a matter of us all linking our resources,” says Graham.

The screening process at Tallaght will involve taking a detailed medical history and investigations such as blood tests and monitoring the heart rate during exercise.

“It’s quick and routine. We would try to provide this at a single visit and we would hope that it will be available without charge to anyone,” says Graham.

“Those found to be at risk can then be treated through lifestyle change, medication or surgery, depending on the diagnosis, he adds.

Scientists are also beginning to unravel the inherited factors that contribute to SCD in families and the Tallaght unit will benefit from links into research and expertise at Trinity College Dublin and at other teaching hospitals, particularly in the area of genetics.

“You simply cannot counsel these families adequately without expert genetics,” says Graham.

At the unit, cardiologist Dr Deirdre Ward will work with families affected by SCD. She is returning from the Heart Hospital in London, where she researched inherited cardiac disorders.

“The important thing is that even though some of these conditions can be fatal in some family members, not everybody in the family who inherits the genetic factors will suffer the same outcome. There are ways of identifying people who are at higher risk,” she says.

And while the unit will concentrate on screening younger people, there will be no defined cut-off age, according to Ward.

“We’re not going to be exclusive and say you are too old to be seen even though you have a rare inherited condition. It will be about trying to focus on young people and being preventative but also managing older relatives, as necessary.”

The new unit will be funded for three years through the Department of Health as well as private and philanthropic donations.

“We will keep a close eye on outcome measures and see if we can make a difference, and if we can then be looking for more public funding,” says Ward.

Greene has been involved in fundraising for the unit and is delighted to be involved in such a positive step, says Greene.

“SCD is a dreadful tragedy, it’s indescribable. The screening is very important to help clear the air for families in the sense that if they are screened for the condition, they may be reassured, or if they have it they can be helped. Screening does save lives.”

(By Claire O’Connell)

(Irish Times, 28 November 2006)

The happiness of Ian and Carolyn McCall in seeing their son write a new page in the Royal’s rugby history books turned to heartache in South Africa. The community was stunned, a family was devastated. But the McCalls decided that John’s death to cardiomyopathy – a disease of the heart muscle which very often affects young people – should help others. Joining with those who have similarly suffered, this saw the formation of a local CRY (Cardiac Risk in the Young) group and, last Wednesday, Northern Ireland’s first independently funded heart screening clinic was launched.
“What we are about is raising awareness of sudden cardiac death and trying to raise funds for the use of raising awareness,” explained Mr McCall. “We could try and held and support people who have been through a similar situation to ourselves.
“Our mission statement is ‘through information and communication to raise and increase knowledge about life-threatening cardiac conditions that affect young people. Our aim is to make screening accessible to young people across Northern Ireland’. That’s what we are about as a group.”

CRY has now established the clinic at Jordanstown; while the group has provided the equipment, the University of Ulster provides the facilities and the staff. It will operate once a month – possibly extended, as and when the need arises. And it could offer a lifeline to many young people who do not yet know they have a heart complaint. Treatment is possible if complaints are diagnosed.

Said Mr McCall: “The results of the screening are e-mailed to London, where CRY has a resident cardiologist, Dr Sanjay Sharma, who will read them and advise on a course of action if need be. This is up and running now. If you went to get screened today, you would find it difficult on the National Health, where you would just join the waiting list.

“If you were to go private, it could cost you up to £350. Sometimes that can be off-putting. We can offer subsidised screening of £35 per person. According to Dr Sharma, there are over 2,000 – and probably more – young people walking around with a possible heart complaint. The sad thing is that with the heart, because it is a major organ, if there is a problem it can result in fatalities, so you don’t have room to wait.”

Indeed, waiting is simply not an option, according to McCall, who feels that all young people in the 12 to 20 age bracket – regardless of fitness and lifestyle – should be tested.

Shortly after John died, the coach of the Portora Royal School rugby team decided to have his young players screened before embarking on a tour of Australia. One of the schoolboys was diagnosed with a heart complaint and, while he still attended the tour, was told not to play any sport.

Mr McCall went on: “He went back to school in September and, one Saturday, when just knocking about with a tennis racket, he dropped dead. Unfortunately it was too late. The health system let him down.

“With the likes of cancer and leukaemia, there are so many different problems to look at. I fully understand that in the grand scheme of things, sudden cardiac death is down the line a bit. But that needs to change.

“We know as a family what it can mean to lose someone this way. It’s almost like a thief has come into your house and stolen your son or daughter.

“We hope that, through this joint venture with the University of Ulster, we can stop this happening and raise awareness. We only hear of the John McCalls and Cormac McAnallens because they are high profile people. Since then there have been a number of families in the Armagh area who have experiences sudden cardiac death. It’s the high profile cases like John and Cormac that bring it to people’s minds. This initiative has come too late for the families in CRY. Before John died we as a family knew nothing about sudden cardiac death, but we now know that we can help stop other families from suffering.

“The burden of grief never leaves. It’s two-and-a-half years since John died. But you never come to terms with the death of a young person. It’s against the grain. Having this knowledge and being involved with this group and running it in some way softens the grief. I would love to be able to say it takes away the grief, but it doesn’t. It softens it.”

There’s an urgent message in his words that is echoed by each and every member of CRY who, through their own personal losses, want others to take note.

“We would advise parents of anyone of secondary school age to get their children screened,” Mr McCall added. £I can’t say that enough. It’s not difficult, it only takes about 20 or 25 minutes.

“Young people who are doing sport are doing quite a bit of sport. They have a bigger sporting agenda than I did when I was at school 30 years ago. If there is a problem with someone’s heart then the pressure of the extra sport can bring that to the fore, and in the majority of times that can lead to sudden cardiac death.”

Of course, screening is something which CRY believes should be done as a matter of course, with much greater emphasis being put on getting the message across. Mr McCall explained: “Italy is the only European country which screens all children as a matter of policy and they have the lowest incidence of sudden cardiac death. CRY as an organisation believe that the statistics are a lot higher than the Government would say.

We have been trying to get them to introduce screening in all secondary schools. We don’t hear of all the deaths. John’s death and Cormac’s death has kicked off a lot of interest in Northern Ireland and has helped get this deal going with the University of Ulster. We want to put it out there to the people of Northern Ireland, whether in Castlederg or Warrenpoint, Ballymena or Fermanagh. If someone hears of someone coming home from school saying ‘’m having dizzy spells’ or ‘I’m feeling faint’, it sets alarm bells ringing. We need to get them screened.

“We beat ourselves up as parents because we though we should have seen something wrong with John.

“The match in which John died wasn’t that intense. The game was start and stop. John died about 22 minutes into the game. About 10 days before he had been playing for the Royal School when they won the Schools’ Cup. We thank God he didn’t drop dead that day. We thank God it was during the international match. That in itself has helped raise awareness. If he had dropped dead in the garden it would not have had the same impact.

“We’ve got to use his death so that we can avert other families from the same fate. Parents must listen and they must take action.”

The first ECG clinic will be held at the University of Ulster at Jordanstown on Saturday, 25 November. For an appointment, contact the CRY Northern Ireland Screening Administrator on 01737-363222.
(By Richard Burden)

(Ulster Gazette, 9 November 2006)

A further defibrillator will be located at the Mid-Ulster Sports Arena in the town.

The Automated External Defibrillators (AEDs) have been supplied by the Cormac Trust which was set up in memory of Tyrone GAA captain Cormac McAnallen who died suddenly because of a heart condition in 2004.

The defibrillators are already available to a range of sports clubs across Tyrone, and in expansion to the scheme, defibrillators are now being installed in town centres throughout Tyrone so they can be accessed seven days a week by volunteers. The initiative is by Cookstown District Council in partnership with the Cormac Trust and the Health Action Zone.

Cookstown District Council and Cookstown Town Centre Forum are seeking volunteers from local businesses in Cookstown town centre to train in the ise of the AED to use in the event of a cardiac arrest occurring in the town centre.

“A patient’s chance of survival reduces every minute that passes, meaning that a defibrillator clost at hand could make all the difference, particularly in a busy town centre such as Cookstown,” said Chairman of Cookstown District Council, Cllr Pearse McAleer.

He said that Cookstown District Council is extremely pleased to be part of the initiative.

“I would encourage volunteers from the business community in the town centre to come forward and be trained in the use of the AED,” he said.

Three to four hours’ training is required to become competent in the use of AED, which involves a range of CRP, basic life support and defibrillator training. A refresher course is also required every 12-24 months. Training involved will incur no cost to volunteer businesses.

Terry Scullion, Cookstown Town Strategy Manager said: “As many as one in five people who have a cardiac arrest do so in a public place and therefore stand to benefit from the ‘Defibrillators in the Community’ programme.

“I would encourage business owners in Cookstown, particularly those in close proximity to the Burnavon Arts & Cultural Centre who want to become a volunteer to contact me.”

(Tyrone Courier, 8 November 2006)