Twelve young people die every week from Sudden Adult Death Syndrome.  Nicky Solloway spoke to one family raising awareness of the condition. 

Camilla Irvine was just 16 when she died in her sleep on a friend's settee a year ago. 

The bubbly teenager from Bedale, North Yorkshire, had not complained of symptoms. 

"She was just perfectly normal," recalls her mum, Wendy.  "She went off to a party, helped clear up at the end then went back to a friend's house.  They watched a DVD till 3am then went to sleep.  In the morning, the others got up to make bacon sandwiches and they tried to wake her and she was just, well she was probably already dead." 

Camilla, affectionately known as Milla, died of Sudden Adult Death Syndrome (SADS).  She had no history of any heart condition and had never complained of any symptoms.  An inquest heard the likely cause of her death was an undiagnosed heart problem. 

"She was just normal.  She was quite sporty and used to ride a lot," says Mrs Irvine. 

"The coroner reassured us that it wasn't drugs, there were no traces found in her body at all.  There was nothing in the post-mortem, not even any alcohol which I was quite surprised about for a 16-year-old girl going to a party." 

Her parents, Wendy and David, have set up a memorial foundation in their daughter's name.  The family recently organised a party to mark the first anniversary of her death. 

"It was Milla's 18th, 21st and wedding rolled into one.  We knew the weekend would be difficult, and our way of dealing with it was to surround ourselves by 300 of our friends and Milla's." 

"People have been really kind and we've raised over a thousand pounds." 

The money will go to the Camilla Irvine Memorial Fund at CRY (Cardiac Risk in the Young), a charity set up to raise awareness of hidden heart conditions and to offer bereavement support. 

Around 12 young people are estimated to die every week from Sudden Adult Death Syndrome. 

According to CRY, which campaigns for more heart screening, the number of young people with a potentially fatal heart condition is far higher than previously believed. 

Alison Cox, founder and chief executive of CRY says: "We find one in 300 young people are carrying a life-threatening heart condition without knowing about it." 

She says the condition is not that rare and that research has shown that one in 500 people have the hereditary heart condition Hypertrophic Cardiomyopathy (HCM) which is the most common cause of sudden death in young people under the age of 30. 

Approximately 80 per cent of sudden deaths in young athletes are due to congenital heart conditions.  But the charity believes that a hidden heart problem may be the cause of numerous other accidental deaths as well.  So a drowning or a car accident may be as a result of an undiagnosed cardiac condition. 

Yet most people are unaware they even have a heart problem; many of the ten or so cardiac conditions which contribute to sudden death syndrome carry no symptoms. 

"An awful lot of people are carrying these conditions in their genes.  The only way you can identify fit and healthy young people with a problem is to offer screening," says Mrs Cox. 

The elatives of a young person who has died from SADS are entitled to be screened for free on the NHS, but CRY is campaigning for all youngsters over the age of 14 to be tested.

"Our aim is to be able to offer screening to everyone for free it we can.  We have restricted it to young people because they are the high risk group, but we would like to offer screening to everyone.  These are not lifestyle conditions; it is something that is within your physiology. 

"We find many people are carrying a life-threatening heat condition without even knowing about it." 

The charity provides a mobile screening service which tours the UK.  For a subsidised cost of £35, youngsters are given an ECG (electrocardiogram) which looks at the electrical pathways around the heart, and an ultrasound test to look at the structure of the heart.  The results are read by a cardiologists. 

In cases where a heart problem is picked up, a youngster is referred to their GP or local hospital for treatment.  Most conditions can either be treated, or can be managed with drugs and lifestyle changes. 

Mrs Irvine backs screening for children, although tests on her family, including her son, George, 15, have revealed nothing. 

"They didn't find anything which is good in a way, but you kind of wish that they had found something so you could have explained it away." 

"I'd like screening to be available for more children.  We obviously didn't know anything was wrong and you wouldn't automatically screen your child unless you knew something was wrong. 

SUDDEN ADULT DEATH SYNDROME

Sudden Adult Death Syndrome, also known as Sudden Arrhythymic Death Syndrome is used to describe a number of different heart conditions which can cause cardiac arrest in young people. 

The majority of young sudden cardiac deaths are due to inherited forms of heart muscle disorder and irregular heart beat. 

Unexplained death in the UK is frequently recorded as a death from natural causes.  In about one in every 20 cases of sudden death, no definite cause can be found, even after the heart has been examined by an expert cardiac pathologist.  This is then called Sudden Arrhythmic Death Syndrome.  It is though that cot death (Sudden Infant Death Syndrome of SIDS) may be partly due to the same causes responsible for SADS. 

Sudden death in older people is usually due to blocked arteries, whereas sudden death in young people is usually from inherited heart condition that run in families. 

Often there are no symptoms, in other cases, a young person may complain of chest pain after exercising, severe breathlessness, palpitations, prolonged dizziness, fainting or blackouts.  Anyone with any of these symptoms should visit their GP, 

Many conditions can be treated with a minor operation or with drugs.  Sometimes the patient is fitted with an internal defibrillator under the skin.