June 19th, 2007
Emma and Sue launch group to help others with heart condition
Two women with the heart muscle disease cardiomyopathy are setting up a support group for affected families across Cornwall.
Emma Kemp from Truro, and Sue Chapple from Hayle are holding the first meeting on Saturday (June 23rd) 2pm, at Chacewater Village Hall near Truro.
Emma, a mother of one, and Sue, an administrative assistant with Cornwall County Council, both have dilated cardiomyopathy, which causes the heart the enlarge and pump less strongly. But the support group will be for people suffering from all types of cardiomyopathy, which is usually inherited.
The condition affects around one in 500 people of all ages, including babies, but often goes undiagnosed. It is the biggest medical cause of sudden death in people under 35 but if found can be treated with drugs and surgery, with most sufferers going on to lead long and full lives.
The support group has the backing of the Cardiomyopathy Association, a charity that offers information and support to affected families. Among the speakers at the first meeting will be the association’s chief executive and medical director Robert Hall.
Emma, who became so ill in 2001 she was told she might need a heart transplant, and Sue, who was diagnosed last summer, said talking to others affected by the condition had given them a real boost and made them realise they were not alone.
Sue said: “This has been the driving force behind setting up our support group. We wanted to give people the chance to learn more about this condition and meet others with it. We have been amazed at the number of people affected – and the wide range of ages.
Both Emma and Sue have gradually improved with medication. Emma, who developed heart rhythm problems in 2002, also has an internal defibrillator that paces her heart and will automatically shock her heart if it goes into a dangerous rhythm.
Emma, who works part time for an out-of-hours GP service, said: “Things are now looking good and I have more energy. I live a full life, enjoying every minute of it.”
Sue was diagnosed in August after having episodes of rapid heart beating on and off for two years.
She was rushed into hospital with severe kidney problems and told she was suffering from heart failure.
Sue said: “I was in a state of shock and felt alone and scared. But joining the Cardiomyopathy Association and finding out more about the condition and its treatments and talking to others with it has made me much more positive.”
Sue, who has also improved markedly on drug treatments, said “I have managed to get back to work full time, drive my car, and enjoy light exercise and the odd night out.”
Sue added: “ A cardiomyopathy support group in Cornwall could benefit hundreds of people. We hope those affected by it and their friends and family members will attend.”
For more information about the new support group call the Cardiomyopathy Association on freephone 0800 0181 024.
For more information about cardiomyopathy, call the freephone number or see the website www.cardiomyopathy.org
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Note to Editors
For more information, contact Sarah Dennis, Information Manager, Cardiomyopathy Association, 01494 791224
Dedicated to Damian McLoughlin, who died age 20 of cardiomyopathy. This site is supported by Damian's family and friends.
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