What exactly is SADS?

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What Exactly is SADS?

As part of my job in CRY I visit a lot of schools, universities, workplaces and community centres to educate people on Sudden Adult Death Syndrome (SADS) and the work that our charity CRY does. I find on my visits that a lot of people are not quite sure what is involved when someone dies from SADS. So I thought this would be a good topic to talk about and I promise to keep this as simple as possible. I am not a medical professional either so I will have to keep it as simple as possible!

The best way to describe what happens to the heart when someone dies from SADS is to compare it to when you switch off a light – the heart literally stops. It’s not like a heart attack, which can be more gradual. It is for this reason that the person has very little time to be resuscitated by a defibrillator. I suppose another comparison would be to a car battery. You need that jolt from the defibrillator to get the heart going again. Unfortunately a defibrillator does not always work and mouth to mouth resuscitation does not work in this case. Even so, it is so important for defibrillators to be available in as many public places as is possible to give an individual the best chance of survival.

A lot of young people who die from this seem to be normal active people. But there are symptoms that you can look out for- chest pains, palpitations (please note these are very common and can be caused for a variety of reasons), fainting and seizures during exercise and shortness of breath during exercise. But the biggest thing to look out for is a family history of someone dying suddenly at a young age and for someone within your family living with a heart condition. There is a lot more detail on this on our website http://www.cry.ie/index.php/need-help/information.

Many people associate SADS with sports and it is a misconception that sport can cause this condition. People who die from SADS already have a heart condition which, in the majority of cases, they do not know about. Sport generally increases the work that the heart has to do, so can increase the incidents of sudden death during a period of intense activity.

If you feel you need to be screened because there is a family history or you suffer from any of the symptoms above, contact your GP and if they feel it is necessary they can refer you on to the CRYP Screening Centre. Please note the majority of families that the centre sees have a family history of SADS. For further information check out our website at http://www.cry.ie/index.php/need-help/information. I hope this has been helpful in giving you a better understanding of what SADS is.

Orla Durkan – Fundraising Manager

If you would like to learn about CRY, find out more about our services or participate in a fundraising activity please contact me or check our website.

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CRY – How we started

CRY SADS Screening Centre

CRYP Screening Centre at Tallaght Hospital

As part of my role in CRY I am out and about at fundraisers, meetings etc. representing the charity.

I am constantly being asked-how did the charity come about, who started it? Hence, I thought this would be a good place to start for my first ever blog for CRY!

For me to tell the story would not do it any justice – the best way to hear the story would be to watch the video that we feature on our website

Marie Greene recounts how her youngest son Peter died suddenly at the age of 15. As a result of Peter’s death, Michael and Marie Greene soon came to realise that there was very little support for families that have lost a young person to sudden adult death syndrome in Ireland.

There was no one to talk to about the grief they were experiencing. Yes, there was grief counselling services out there, but none that specialised in losing someone so young, so suddenly, to a heart condition they didn’t even realise they had.

There was also the issue of getting the rest of the family screened – they had been told at the time that there could be an instance where other members of the family may have a similar condition.

In order to get everyone screened they would have to do this privately and it would be very expensive. As they looked into the SADS condition they soon came to realise that there was very little information out there in the public realm.

Hence, they decided to start the charity Cardiac Risk in the Young to help other families so they could receive the support that the Greene family did not get when their son Peter died.

CRY originally started out by raising awareness for Sudden Adult Death Syndrome as well as providing a free counselling service to families and friends who had lost a young person to sudden cardiac death.

The team from the charity set up a network of Volunteers, who themselves had lost someone to SADS so at least those requiring support were assured that they were talking to someone who understood what they were going through.

Five years after the charity was started CRY managed to raise enough money to establish a specialised screening centre based out in Tallaght Hospital.

This screening centre now sees between 1500-2000 patients yearly – from families all over Ireland. CRY fundraises to ensure this is a free service for families so they do not have to go to the expense of getting this done privately and ability to pay is never an obstacle to getting access to essential services.

The centre has now developed into one of the most comprehensive screening services in Ireland that is cardiologist lead.

Because of Michael and Marie’s efforts, they have ensured that families going through what they experienced now have a lot more structure and support to help them through what is probably the toughest experience of their lives.

Michael Greene is the Chairman of our charity and Marie is head of counselling and family support.

I see the incredible work that they do and they both work tirelessly as volunteers.

I am proud to work as the Fundraising Manager for this incredible charity and am privileged to see the huge difference that is being made to so many lives on an ongoing basis.

Orla Durkan – Fundraising Manager

If you would like to learn about CRY, find out more about our services or participate in a fundraising activity please contact me or check our website