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A father of two has to keep his mobile phone
permanently on vibrating alert - because the ring tone could kill him.
Call centre recruitment team leader Jon
Cotterill-Bolsover has one of the rarest genetic heart conditions in Western
Europe.
any unexpected loud noise such as his phone
ringing or a sudden shock could stop his heart beating.
Mr Cotterill-Bolsover, 28, suffers from Brugada
Syndrome, a rare disorder that disrupts the heart's normal rhythm and was
only identified in the 1980's.
He said: "The danger with mobile phones for
someone with my condition is that the ringing can scare you and send the
heart into an abnormal rhythm.
"It is safer to keep the phone on vibrate only or
silent mode. It is just not worth the risk if my heart stops for the
sake of a phone call.
"I also use my phone as an alarm clock in the
morning but ensure it plays a slow piano tune which builds up gradually.
That way it cuts out any potential problems."
Mr Cotterill-Bolsover, who has a pregnant fiancé
Katrina and daughters Natalia, five, and Anastasia, four, is most fearful of
quiet rooms.
He said: "When I'm at work or in a crowd on the
streets there is noise all around so a phone ringing would not be a problem.
"But it could cause a shock if I was in a quiet
room and someone's mobile rang. It is out of my control, all I can do
is try and keep calm."
Mr Cotterill-Bolsover, from Darfield, Barnsley is
one of the few sufferers who know they have the condition - most die before
it is diagnosed. Undiagnosed heart conditions, usually labelled under
the umbrella Sudden Unexpected Death Syndrome (SUDS), kill eight under-35s
every week in Britain.
The former martial arts competitor only found out
about his condition by chance when he contracted a kidney infection last
August.
Doctors detected an irregular heart beat but were
baffled as to the cause. It was only when he was referred to
specialists at Sheffield's Northern General Hospital that the disorder was
confirmed.
It restricts the movement of sodium ions into the
body cells. There are no physical signs but the genetic defect causes
an abnormal heart rhythm that can lead to blackouts, palpitations or sudden
death.
To control his condition, he was fitted with an
Implantable Cardiac Defibrillator last November. The unit shocks the
heart if it stops and improves the odds of survival by more than 90 per
cent.
He said: "In a way it was fortunate. I had
the kidney infection otherwise my condition may never have been discovered
before it was too late.
"One of the doctors at Barnsley District Hospital
had just returned from a SUDS conference and suspected I had Brugada
Syndrome so I was sent for further tests in Sheffield which confirmed the
diagnosis."
Before such equipment was developed, sufferers had
little life expectancy beyond 30. Now his is busy planning for his
wedding to Katrina next month and hopes to form a SUDS support in the
Barnsley area.
The founder and chief executive of the charity
Cardiac Risk in the Young, Alison Cox, said: "In a way Jon is one of the
lucky ones. Many young people simply don't find out about their heart
conditions and sadly die.
"We are hoping to introduce a national screening
programme and we believe any young person who is worried about their heart
of has a history of sudden death in their family should be screened."
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