HEADLINE: EVEN FITNESS CAN KILL YOU;
A DEVASTATED FAMILY ARE VICTIMS OF A FATAL HEART CONDITION FOR WHICH

BYLINE: JILL PALMER

BODY:


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
screened.

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
be
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.