On average eight young sportspeople die every year from an undiagnosed heart defect. We look at what is being done by the John Ibbotson Memorial Fund to promote awareness of this.
In October 2005, John Ibbotson died suddenly at the age of 27. He was a talented all-rounder who turned pro at 20 and raced in Belgium and Italy before finding his true metier as a coach, with his own business called Fit-For. The cause of his death was a heart abnormality that simply caused it to stop beating.
Ibbotson had no symptoms of the abnormality before his death, but it could have been detected with a simple test. When his mother and fiancé set up a fund in John's name to support young cyclists who shared 'Ibbo's' ambition as a young rider, to reach the top level of road racing, they were determined to include cardiac screening as part of their package of support.
On their way
Now the fund has enough money to support two young riders for a year, racing with two French clubs, in 2008. They are Mat Green and Tom Copeland, both from John's home county, Surrey. John's friend, and a man closely involved with the fund, Russell Clarke, explained the selection process to us and more importantly the screening the riders went through:
"We were looking for two riders to benefit from the legacy of what John was trying to do before he started his coaching business. Keith Butler from the Surrey Cycle Racing League helped us to pick the riders and we settled on Matt Green, who has ridded the Ras in Ireland, and Tom Copeland, who is being coached by Sean Yates. Sean seems to think that Tom has some potential.
"Tony Mills, who used to own one of our local bike Shops, Dauphin Sport, and now lives in Brittany, sorted our places for Matt and Tom is two Breton clubs. We've got enough money to support them for a year, but before they went we wanted to give them a full MOT on their hearts."
The Ibbotson Fund turned to a UK charity called CRY for this. CRY stands for Cardiac Risk in the Young, and it was formed by Alison Cox, the wife of British pro tennis player Mark Cox, whose son went to America to pursue his tennis career and was found, by an athlete screening process they had there, to have an undiagnosed and potentially life-threatening heart defect.
At the time, although it was known that there were a number of unexplained sudden deaths among young athletes, no such screening processes were easily available in Britain, so Mrs Cox set up CRY in 1995, to increase awareness of Sudden Adult Death Syndrome (SADS).
The charity has grown and recently it launched a far-reaching study into the problem, called Save Our Athletes. It is funding a screening programme using the latest equipment available and headed by Professor Grey Whyte who, as well as holding a number of other key positions, is the director of science and research at the English Institute of Sport.
At the launch, which was attended by athletes from many sports, including Olympic medallist Rob Hayles, Professor Whyte said:
"The Save Our Athletes project will be world leading, enabling CRY to research the role of cardio-vascular screening, and allowing us to fully identify disorders capable of causing sudden cardiac death."
Under Whyte's auspices, the charity opened a centre for sports cardiology at the Olympic Medical Institute at Northwick Park Hospital in Harrow. So, when the Ibbotson fund heard that CRY were offering subsidised screening using the latest equipment from Royal Philips Electronics at the centre, they applied to have Green and Copeland tested there.
"We heard that it was where the British Olympic Association were doing a lot of their screening" says Clarke. "The test was a full MOT on their hearts. They had an ECG and an ultrasound test, and they were both given a complete all clear.
"Since John's death I've become really aware of heart problems in athletes and how they might have been undiagnosed in the past. Just in my own area, we've had Sean Yates with his problem, and another top rider, Russell Fenton raced for years at a high level and has only recently found out that he had a problem.
"When you think about it, there have always been stories of riders just dropping dead. It's often been put down to drugs, but it has made me think now that the problem is much more common."
Yates, whose heart problem emerged after his pro career was over, says. "Testing is common sense. The two of them will probably get more when they get to their clubs in France."
The Ibbotson Fund has pledged to support CRY in its current campaign to introduce screening for teenagers in secondary schools, as well as Olympic-level athletes, and promoting their subsidised screening programme at Harrow, Colchester and in Northern Ireland. CRY also has a mobile unit that visits sports clubs, schools and local communities.
It makes sense at any time of life to have a complete physical check-up if you are involved in sport. Some national cycling bodies already make it a condition of their issuing a racing licence, although British Cycling doesn't at the moment.
One day, CRY hopes to make the screening of young sportspeople a routine precaution that everyone goes through.
The tests on Matt Green and Tom Copeland were carried out a Northwick Park by cardiac screener Clare Farrell. She explained the process.
"The electrocardiogram was a resting, non-invasive look at the electrical activity of their hearts. The reason it is done is to compare the reading against normal heart reading. By comparing measurements of the trace the heart produces, looking at things like the QT interval, against a normal trace, you can detect any abnormalities in the structure of the heart, such as HCM.
"The ultrasound gives you a picture of the heart in action. From that you can check the various dimensions of the heart and you can see the blood flowing into and out of it. This shows any abnormalities or restrictions that might be present and will require further investigation by a consultant cardiologist.
Heart defects that cause sudden death in young people
We look at the main two causes, both of which can be detected by screening.
Heart-related sudden death in older people is usually due to coronary heart disease (blocked arteries n the heart), but sudden death in people who are less than 35 years old is usually due to hereditary conditions. The most common is Hypertrophic Cardiomyopathy (HCM), followed by Arrhythmogenic Right Ventricular Cardiomyopathy (ARC).
This is sometimes called chunky heart disorder. It is uncommon, although as many as 10,000 people might have it in the UK. Heart muscle in a normal heart is arranged in an ordered way and, although it may become thickened as a result of athletic training, it keeps its ordered shape and doesn't interfere with blood flow. It may also become thickened due to height blood pressure.
However, in Hypertrophic Cardiomyopathy cases, the heart muscle fibres are arranged haphazardly and become thickened for no apparent reason, making the heart vulnerable to potentially fatal heart rhythms.
HCM is caused by abnormalities in the genes that make the proteins responsible for the heart contraction. The condition affects either sex and all ethnic groups, and abnormal growth can even begin the in the foetal heart."
The symptoms and severity of HCM vary – many sufferers do not even show any symptoms at all and suspicions are raised when another family member is screened or diagnosed. It is also quite common for nothing to be know until unexplained sudden death occurs. However, any shortness of breath, chest pains, palpitations or light headedness and blackouts should be checked by a GP as soon as possible.
Diagnosis is by investigation of the heart's electrical signal by an electrocardiogram (ECG), but the gold standard test is by looking at the heart while it's working by using ultrasound techniques. Clinics supported by CRY carry out both of these tests.
This disorder results in the progressive replacement of normal right ventricular muscle tissue by fibrous tissue and fat. The problem can also spread to other heart chambers. It's not known why this happens but the condition is believed to be genetic. Again, it affects both sexes and all ethnic groups, but there is a larger than average distribution of this disease in northern Italy and a lot of the research work has been done there. The children of an affected person have a 50 per cent chance of inheriting this disease.
Symptoms include bouts of rapid heartbeat, associated with light headedness or fainting. Unusually for a heart complaint, shortness of breath and chest pains are rare. Diagnosis of the disease is very difficult as its presence may not show on ECG's and techniques have to be combined to investigate it thoroughly. If routine screening has revealed any suggestion that this disorder may be present, patients are referred for further investigation using more specialised techniques.
We asked the two Ibbotson-funded riders what the tests they underwent were like, and what difference the results have made to them.
How old are you Matt?
Tell us what the ECG was like
"It was no problem if you don't mind taking your shirt off with people watching. They just stick a load of electrodes on your chest and you lie still. There was no discomfort at all.
Where will you be based in 2008 and how long will you be there?
I'll be living in Rennes and riding for a club called VCR Point P. The fund is supporting me in France from February until September.
How much training are you doing at the moment?
I'm full-time, so about 25 hours a week and it's soon to go up.
You got an all-clear after both tests, is that a useful thing to know, bearing in mind how much work you are doing?
Yes. A heart problem is something I've never thought about, so to be prompted to go and be checked out was good. I suppose it gives you the peach of mind to get on with your training.
How old are you Tom?
What was having the ultrasound heart test like?
They rub gel all over your chest and just move a sensor around on it. You don't see anything while this is happening.
Then later they put all the pictures together and you see a video of your heart working. I thought it was a good thing to see, because not many people will see their own hearts.
Have the tests made a difference to you?
Yes, it's good to know that you've got back-up like that. It's good to know that you are OK and that you've got nothing physically to worry about.
Where will you be based in 2008 and what club will you ride for?
In Quimper in Brittany. I'll be riding for VS Quimper.
How much training are you doing at the moment?
About 20 hours.