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Screen for Killer Genes, Urge Tragic Families

Filed under: News/Events - Posted on Monday, February 27th, 2006 @ 3:56 pm

Ulster families affected by a killer heart condition that strikes without warning are demanding the introduction of a special screening programme for young people across the province.

And in a poignant plea to Health Minister Shaun Woodward they said: “Please don’t let any more of Northern Ireland’s young people die.” But health chiefs say they have no plans to screen.

Families spoke to the Telegraph after a special weekend conference, organised by the Cardiomyopathy Association.

Those calling for testing include Bridget McAnallen, whose young GAA star son, Cormac, died from Sudden Cardiac Death in the Young.

Speaking to the Telegraph just four days before the second anniversary of Cormac’s death, she said: “Screening could have saved his life. Prevention is the only cure for this condition. The condition should be given an absolute priority. It strikes so suddenly that the person has no chance and often strikes people who are very fit.

“There needs to be screening and young people should demand to be screened. These are not invasive tests. They only take a few minutes and could save lives. We feel that while the condition is not being ignored it is not being given priority.

“I would ask Shaun Woodward to ensure enough doctors and nurses are trained to recognise these conditions and that their expertise is available in all the major hospitals.”

Cormac, who was captain of the Tyrone team, was found dead at his home in Eglish, Tyrone, on March 2, 2004. He was one of a number of young people across Ulster, apparently healthy and fit, who have died from Sudden Death Syndrome (SDS) or cardiomyopathy, an umbrella term for genetic heart death in the young.

His family set up the Cormac Trust and raised more than £100,000 to buy defibrillators for sports clubs.

The trust was also set up to raise awareness and promote screening – and is in the process of setting up a website.

Meanwhile, Ulster woman Gillian McFarlane (33), is only too aware of the devastation caused by SDS, having lost four members of her family to the condition. In each case there were no early warning symptoms.

The Dungannon woman was screened as a result of the deaths within her own family – but does not have the gene.

However, her 55-year-old mother Ethel found she had the condition-causing gene – and is now monitored regularly. Her thee-year-old niece has also got the gene and will be screened regularly.

Asked if they had any plans to introduce a screening programme, the Department of Health said: “The UK National Screening Committee advises Government and the four UK Health Departments on all aspects of screening policy. It has considered population screening for hypertrophic cardiomyopathy and has advised that the research evidence does not support the introduction of a screening programme.”

The Deadly Condition that gives no Warning:

• Sudden Death Syndrome has been dubbed the adult version of cot death.
• SDS is an umbrella term. What happens is that the victim suffers a cardiac arrest that can occur for many different reasons – or none that can be identified.
• The most worrying thing is that victims tend to be apparently healthy and fit young adult, often in the prime of their sporting life.
• And the first symptom most of them show of underlying cardiac problems is their death.
• Included in this group is the inherited heart diseas cardiomyopathy.
• Among its victims was 18-year-old Armagh schoolboy rugby star John McCall who collapsed during the Ireland v New Zealand game at the U-19 World Cup, in South Africa.
• Cardiomyopathy, a structural abnormality in the heart muscle, is the most common cause of sudden cardiac death in young people.
• Statistics show that one in 20 of all cases of sudden cardiac death in people under 65 years goes unexplained.
• Researchers feel that many people who have died suddenly may have inherited an undiagnosed tendency to an abnormal heart rhythm.

By Nigel Gould, Health Correspondent
(Belfast Telegraph, 27 February 2006)

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