Copyright 2003 Newcastle Chronicle & Journal Ltd
EVENING CHRONICLE (Newcastle, UK)
June 23, 2003, Monday Edition 1
SECTION: LIFE HEALTH, Pg. 18
LENGTH: 1177 words
HEADLINE: Coping with his deadly condition
BYLINE: By Julie Cush, The Evening Chronicle
BODY:
One in 500 people in Britain suffer from a condition known as cardiomyopathy
which affects the heart muscle and can result in sudden death. But rather than
being a death sentence, many have the so-called timebomb under control and are
living life to the full.
Frank Lumsden has got used to the funny looks he gets when he suddenly leaps
in the air.
It can happen any time, at the local post office or sitting on the loo and
although it only happens for split second it is extremely painful.
But Frank, 63, isn't complaining. This is because every time it feels like
his whole body has had a massive electric shock, the experience has just saved
his life.
Frank suffers from hypertrophic cardiomyopathy, a genetic heart condition
which means his heart is enlarged and blood isn't being pumped around his body
properly.
Four years ago he had to be fitted with a defibrillator a battery-powered
device the size of a bar of soap and the shock he gets means it has just kicked
into action and restored his heart rhythm to normal.
He said: "It only happens once a year and doesn't make any noise, but boy can
you feel it. It literally makes me jump and although it only lasts for a split
second it does hurt.
"It happened once in the post office and I staggered a bit so there were
probably some who thought I was drunk.
"It also leaves me feeling groggy and as soon as it happens I have to get
myself to hospital and get checked out.
"It is horrible but I know it has just saved my life."
Hypertrophic cardiomyopathy is the biggest single cause of sudden death in
under 25s.
Every week four people die needlessly often children and young people because
the condition is not diagnosed or has been misdiagnosed.
The condition hit the headlines when Daniel Yorath, the 15-year-old son of
the soccer star, Terry Yorath and brother of TV broadcaster Gabby Logan, died
suddenly while playing football.
Frank, of Pelton, Chester-le-Street, married to Lorna, 60, and who has a son
Mark, 33, wasn't diagnosed until he was in his 40s and puts that down partly to
his own laziness.
He said: "I wasn't exactly a sporty type. I liked the odd game of cricket or
football but never over-exerted myself. I'm glad now that I was a bit lazy or I
could have died suddenly before being diagnosed.
"I was living in Derby at the time of my first problem. Doctors thought it
was a heart attack. I spent time in hospital and was told to do more exercise
the wrong thing.
"It was only when I came back to the North East and went to the excellent
Freeman Hospital in Newcastle that I was diagnosed after a heart scan.
"Both my parents died of heart problems. The first thing I then did was send
my son for tests which, thankfully, were clear."
Frank believes he is very lucky to have had an early warning and supports
screening all newborns for the condition.
He said: "I have come to terms with my condition and although it is a drag
taking 17 tablets a day I'm grateful to be alive some people are not so lucky.
"I take things easy and make sure I don't walk too far.
"It has been very hard for my family, especially for my wife who is a nurse
and has been living on a knife edge. She is still working and every day she
rings up to see if I'm okay.
"The condition is not a death sentence but it makes sense to me to test all
babies for cardiomyopathy and save more lives prevention is best as there is no
cure."
There are different methods of diagnosing the disease an electrocardiogram
[ECG]; an ultrasound echocardiography [ECHO]; exercise tests; magnetic resonance
scanning [MRI] and gene testing.
Symptoms include breathlessness, often confused with asthma, fainting, heart
rhythm abnormalities, chest pains and dizziness.
It is a genetic condition and although not curable is almost always
treatable.
The Cardiomyopathy Association is a charity which provides support for
families.
It is also campaigning for screening of close relatives of sufferers and
stresses the condition is not necessarily a death sentence.
There are four forms of the disease: hypertrophic [HCM], dilated [DCM],
arrhythmogenic right ventricular [ARVC] and restrictive [RCM].
One in 500 people are estimated to have HCM in the UK although some experts
believe that the incidence could be higher closer to 1 in 100.
It is an excessive thickening of the heart muscle and may be triggered by
high blood pressure or prolonged athletic training.
It often affects young people who are physically active and in extreme cases
sudden death can occur during exertion if the problem remains undiagnosed.
A spokeswoman for the Cardiomyopathy Association said: "Now there is no cure
for HCM although there is a slight possibility that some drugs may decrease the
degree of muscle thickening.
"Developments are most likely to come from the early detection of those
carrying the gene for HCM."
The dilated form of the disease is the No 1 cause of heart failure, leading
many patients to need a transplant.
Just over a year ago Leanne Nicholson's family were told to say their
goodbyes as she lay in a coma after a virus attacked her heart.
But thanks to a world-wide search a new heart was found and surgeons at the
Freeman Hospital were able to save the 14-year-old's life.
Her family dad Rob, and mum Helen, both 35, brothers Scott, 11, and Ryan,
five, will always be eternally grateful to the donor who made the ultimate
sacrifice to give Leanne life.
Tests to diagnose irregularities
How cardiomyopathy is diagnosed:
Electrocardiogram or ECG
An ECG records the electrical signal from the heart and is performed by
placing electrodes on the chest, wrists and ankles. In hypertrophic
cardiomyopathy the ECG usually shows an abnormal electrical signal due to muscle
thickening.
In a minority of patients [5-10 per cent] the ECG may be normal or show only
minor changes. ECG abnormalities are also not specific to Hypertrophic
Cardiomyopathy and may be found in other heart conditions.
* Echocardiogram or ECHO
This is an ultrasound of the heart. Like the ECG it is an entirely safe test
and produces a picture of the heart where excessive thickness of the muscle can
be easily measured.
* Additional equipment called Doppler ultrasound can produce a colour image
of blood flow within the heart.
* For more information call the Cardiomyopathy Association on 0800 0181024 or
visit www.cardiomyopathy.org
Treating the heart condition
Treatment for hypertrophic cardiomyopathy [HCM]:
Beta-blockers; calcium antagonists; anti-arrhythmic drugs; anticoagulants;
diuretics; antibiotics;
Surgery: heart transplantation is suitable for a very small minority of
patients
* Other forms of treatment: Electrical cardioversion. Pacemaker. Dual Chamber
Pacemaker. ICD [Implantable Cardioverter Defibrillator]. Catheter based
treatments [e.g. alcohol septal ablation].
Most patients with HCM have at least one close relative with the condition.
There is a 50 per chance of children inheriting the condition from an
affected parent.
LANGUAGE: ENGLISH
LOAD-DATE: June 23, 2003
EVENING CHRONICLE (Newcastle, UK)
June 23, 2003, Monday Edition 1
SECTION: LIFE HEALTH, Pg. 18
LENGTH: 1177 words
HEADLINE: Coping with his deadly condition
BYLINE: By Julie Cush, The Evening Chronicle
BODY:
One in 500 people in Britain suffer from a condition known as cardiomyopathy
which affects the heart muscle and can result in sudden death. But rather than
being a death sentence, many have the so-called timebomb under control and are
living life to the full.
Frank Lumsden has got used to the funny looks he gets when he suddenly leaps
in the air.
It can happen any time, at the local post office or sitting on the loo and
although it only happens for split second it is extremely painful.
But Frank, 63, isn't complaining. This is because every time it feels like
his whole body has had a massive electric shock, the experience has just saved
his life.
Frank suffers from hypertrophic cardiomyopathy, a genetic heart condition
which means his heart is enlarged and blood isn't being pumped around his body
properly.
Four years ago he had to be fitted with a defibrillator a battery-powered
device the size of a bar of soap and the shock he gets means it has just kicked
into action and restored his heart rhythm to normal.
He said: "It only happens once a year and doesn't make any noise, but boy can
you feel it. It literally makes me jump and although it only lasts for a split
second it does hurt.
"It happened once in the post office and I staggered a bit so there were
probably some who thought I was drunk.
"It also leaves me feeling groggy and as soon as it happens I have to get
myself to hospital and get checked out.
"It is horrible but I know it has just saved my life."
Hypertrophic cardiomyopathy is the biggest single cause of sudden death in
under 25s.
Every week four people die needlessly often children and young people because
the condition is not diagnosed or has been misdiagnosed.
The condition hit the headlines when Daniel Yorath, the 15-year-old son of
the soccer star, Terry Yorath and brother of TV broadcaster Gabby Logan, died
suddenly while playing football.
Frank, of Pelton, Chester-le-Street, married to Lorna, 60, and who has a son
Mark, 33, wasn't diagnosed until he was in his 40s and puts that down partly to
his own laziness.
He said: "I wasn't exactly a sporty type. I liked the odd game of cricket or
football but never over-exerted myself. I'm glad now that I was a bit lazy or I
could have died suddenly before being diagnosed.
"I was living in Derby at the time of my first problem. Doctors thought it
was a heart attack. I spent time in hospital and was told to do more exercise
the wrong thing.
"It was only when I came back to the North East and went to the excellent
Freeman Hospital in Newcastle that I was diagnosed after a heart scan.
"Both my parents died of heart problems. The first thing I then did was send
my son for tests which, thankfully, were clear."
Frank believes he is very lucky to have had an early warning and supports
screening all newborns for the condition.
He said: "I have come to terms with my condition and although it is a drag
taking 17 tablets a day I'm grateful to be alive some people are not so lucky.
"I take things easy and make sure I don't walk too far.
"It has been very hard for my family, especially for my wife who is a nurse
and has been living on a knife edge. She is still working and every day she
rings up to see if I'm okay.
"The condition is not a death sentence but it makes sense to me to test all
babies for cardiomyopathy and save more lives prevention is best as there is no
cure."
There are different methods of diagnosing the disease an electrocardiogram
[ECG]; an ultrasound echocardiography [ECHO]; exercise tests; magnetic resonance
scanning [MRI] and gene testing.
Symptoms include breathlessness, often confused with asthma, fainting, heart
rhythm abnormalities, chest pains and dizziness.
It is a genetic condition and although not curable is almost always
treatable.
The Cardiomyopathy Association is a charity which provides support for
families.
It is also campaigning for screening of close relatives of sufferers and
stresses the condition is not necessarily a death sentence.
There are four forms of the disease: hypertrophic [HCM], dilated [DCM],
arrhythmogenic right ventricular [ARVC] and restrictive [RCM].
One in 500 people are estimated to have HCM in the UK although some experts
believe that the incidence could be higher closer to 1 in 100.
It is an excessive thickening of the heart muscle and may be triggered by
high blood pressure or prolonged athletic training.
It often affects young people who are physically active and in extreme cases
sudden death can occur during exertion if the problem remains undiagnosed.
A spokeswoman for the Cardiomyopathy Association said: "Now there is no cure
for HCM although there is a slight possibility that some drugs may decrease the
degree of muscle thickening.
"Developments are most likely to come from the early detection of those
carrying the gene for HCM."
The dilated form of the disease is the No 1 cause of heart failure, leading
many patients to need a transplant.
Just over a year ago Leanne Nicholson's family were told to say their
goodbyes as she lay in a coma after a virus attacked her heart.
But thanks to a world-wide search a new heart was found and surgeons at the
Freeman Hospital were able to save the 14-year-old's life.
Her family dad Rob, and mum Helen, both 35, brothers Scott, 11, and Ryan,
five, will always be eternally grateful to the donor who made the ultimate
sacrifice to give Leanne life.
Tests to diagnose irregularities
How cardiomyopathy is diagnosed:
Electrocardiogram or ECG
An ECG records the electrical signal from the heart and is performed by
placing electrodes on the chest, wrists and ankles. In hypertrophic
cardiomyopathy the ECG usually shows an abnormal electrical signal due to muscle
thickening.
In a minority of patients [5-10 per cent] the ECG may be normal or show only
minor changes. ECG abnormalities are also not specific to Hypertrophic
Cardiomyopathy and may be found in other heart conditions.
* Echocardiogram or ECHO
This is an ultrasound of the heart. Like the ECG it is an entirely safe test
and produces a picture of the heart where excessive thickness of the muscle can
be easily measured.
* Additional equipment called Doppler ultrasound can produce a colour image
of blood flow within the heart.
* For more information call the Cardiomyopathy Association on 0800 0181024 or
visit www.cardiomyopathy.org
Treating the heart condition
Treatment for hypertrophic cardiomyopathy [HCM]:
Beta-blockers; calcium antagonists; anti-arrhythmic drugs; anticoagulants;
diuretics; antibiotics;
Surgery: heart transplantation is suitable for a very small minority of
patients
* Other forms of treatment: Electrical cardioversion. Pacemaker. Dual Chamber
Pacemaker. ICD [Implantable Cardioverter Defibrillator]. Catheter based
treatments [e.g. alcohol septal ablation].
Most patients with HCM have at least one close relative with the condition.
There is a 50 per chance of children inheriting the condition from an
affected parent.
LANGUAGE: ENGLISH
LOAD-DATE: June 23, 2003
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