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Family Mourns, but Learns...


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  • Family Mourns, but Learns...




    IT'S a hidden condition which, ironically, preys on those who pride
    themselves on being in tip-top shape.

    Hypertrophic cardiomyopathy is an incurable hereditary disease that kills
    hundreds of fit young people every year.

    It's the major cause of sudden heart death in the under 25s and the vast
    majority of victims have never been diagnosed - yet the condition is treatable.

    This is why the Cardiomyopathy Association is campaigning for mandatory
    routine screening of first-degree relatives of sufferers.

    Graeme Barrow was just 34 when he collapsed and died after completing the
    London marathon in 2001.

    The leisure centre manager had always been fit and healthy, and it was
    assumed that he'd suffered a heart attack.

    But Graeme had a deadly disease which causes thickening of the heart muscle.
    It affects one in 500 people and is a major killer.

    Yet there are usually no symptoms and most sufferers are unaware they have
    the condition.

    The first sign that anything is wrong is when they die.

    As it runs in families, there was a 50-50 chance that Graeme's two brothers
    and three sisters could also have the condition.

    So although they all appeared fit and healthy, they were advised to be

    Thankfully, his sisters Susan, Kate and Jane, and brother Paul were clear.

    But 41-year-old Mark received the shattering news that he, too, suffered
    from the disease that had killed his younger brother.

    "There had never been any suggestion of heart problems in the family," says
    Paul, 44, of Chorley, Lancs.

    "Graeme had been extremely fit. Sport was his life. He was manager of a
    leisure centre, he had run marathons and half-marathons and played football.

    "Apparently, the condition usually affects people in their teens but Graeme
    had no problems then. His death left us all numb."

    THE family were still coming to terms with the death of their mother from
    motor neurone disease a few months earlier and Graeme was running in the
    marathon to raise money for MND.

    "Then, in the midst of our grief for Graeme, we were told there was a 50-50
    chance of each of us being affected.

    "And if we were affected, then our children could be, too. Graeme was the
    only one who was single. Mark and I and our sisters are all married with kids."

    Ironically, Mark was the first to be tested. He has private medical
    insurance through Penguin Books, where he is sales operations director.

    "Even though Graeme had suffered no symptoms and had no idea anything was
    wrong with him, I remained convinced that there couldn't possibly be anything
    wrong with me. I treated it as a routine test - better to be safe than sorry.

    "As was the case with Graeme, I had always considered myself fit and
    healthy. I ran, cycled and swam. I even played semi-professional football until
    an injury a few years ago."

    Mark had an exercise test, an ECG (which records electric signals from the
    heart) and ECHO (an ultrasound which measures muscle thickness).

    "I was stunned when the tests showed I had the same heart condition as
    Graeme," he says.

    "All sorts of frightening things go through your mind. What was my life
    going to be like with a heart condition? Would I be an invalid? Would I still
    able to enjoy life?

    "But although there is no cure, the condition is manageable. I've just had
    to adjust my lifestyle but not to a great extent.

    "It simply means that I can't take part in competitive sports. I mustn't do
    anything that would raise my heartbeat. I couldn't run a marathon or take part
    in a cycle race or play football, for instance. But I can still cycle and swim.
    And I had already given up playing football because of a hip injury.

    "As long as you stick within the perimeters, it doesn't adversely affect
    your life at all. I have to take a pill every day but that isn't a hardship."

    Paul and Mark are now actively supporting the Cardiomyopathy Association's
    screening campaign.

    ALTHOUGH they were tested, many first-degree relatives aren't given the
    opportunity, which could put their lives at risk.

    Ironically, it is sufferers who are physically active who are most at risk.

    People with cardiomyopathy who do little exercise are unlikely to ever exert
    their damaged heart enough to cause a problem and remain unaware that they have
    the condition.

    But if left undiagnosed, physical activity puts excessive pressure on the
    heart and can kill.

    Drugs can help a sufferer manage the condition and can decrease the degree
    of muscle thickening. And once they are aware of the risks, sufferers can avoid
    excessive physical activity.

    Graeme's family is also fundraising for further research, which they hope
    will result in the development of drugs that return the heart to normal.

    They are setting up a fund in Graeme's name and have already held a memorial
    football match and a golf day which raised pounds 4,000.

    "I suppose the biggest fear is for my children, who have a 50-50 chance of
    inheriting it," adds Mark. "My daughter Leah is 10 and son Luke is seven.

    "Problems usually start to occur in the teenage years so they will soon have
    to be tested.

    "But the important thing is to know that you have got it and adjust your
    life accordingly.

    "Graeme didn't know he had it and, tragically, he died.

    "I do know I have it, so I am not going to die from it."

    Cardiomyopathy Association, 40 The Metro Centre, Tolpits Lane, Watford,
    Herts, WD1 8SB. Freephone helpline 0800 0181 024; www.cardiomyopathy.org
    Donations can be made in memory of Graeme Barrow.