July, 2007
Bridgend other seeks more information about family’s heart condition to help her young son
A Bridgend mother who lost her husband suddenly, aged 30, to an inherited heart disease will be finding out more about the condition on Saturday (July 7) at a special meeting in Cardiff.
Ann Power-Jones, a 42-year-old nurse, lost her husband Ray ten years ago to cardiomyopathy, a disease of the heart muscle. It usually develops in the teenage years and is the biggest medical cause of sudden death in the under 35s.
Because the condition runs in families their 13-year-old son Elis is receiving regular heart checks to ensure that if he does develop the disease he gets early treatment that saves lives.
Ann will be hearing about latest research into cardiomyopathy and new treatments at an information day being held at the Holiday Inn, Cardiff, by the Cardiomyopathy Association, a charity that supports affected families.
Speakers include top cardiomyopathy expert Dr Perry Elliott from the Heart Hospital in London and Dr Dhavendra Kumar, consultant in clinical genetics at the All Wales Medical Genetics Service.
Ann’s husband appeared to be a fit and healthy when he collapsed at work in 1997. He was rushed to hospital but paramedics and hospital staff were unable to save him.
Ann said: “He was a very fit 30-year-old who was devoted to his family. He played rugby and squash, and ran every day. He ate healthily, never smoked and drank very little.”
A post mortem revealed he had died of hypertrophic cardiomyopathy, a condition that causes the heart muscle to thicken. This can cause dangerous heart rhythms.
Ann said: “As a cardiac nurse I knew a bit about the condition and that there were implications for our son. In my search for more information I found the Cardiomyopathy Association and they have been an invaluable source of information and support.”
Elis and Ray’s parents and brother were sent for heart checks, which revealed his father Michael also had the condition. He remains fit and well.
The family are currently undergoing genetic testing to see if the mutant gene in the family can be found. Then it is possible to test other family members to see if they are at risk of developing the condition or not.
Ann said: “The last ten years have been difficult but Elis has kept me going and I am very positive about the future. He is being seen by doctors in Cardiff and Great Ormond Street Hospital every six months but currently shows no signs of the disease. But if he is diagnosed in the future I know he will get the best care with the most up-to-date treatment options."
“Despite my worries Elis leads a full and active life and is always out skateboarding and biking with his mates. And if he is diagnosed he will be in a much better position than his father ever was.Screening for family members of those affected by cardiomyopathy is so important. People can then be diagnosed and treated before it is too late. Treatments are also getting better all the time, saving more and more young lives.”
It is estimated that cardiomyopathy affects around 1 in 500 people of all ages, including babies, and four young people die from it each week in the UK. Some affected people live full lives not knowing they have it, while others will need treatments such as drugs, pacemakers and internal defibrillators.
The all day meeting in Cardiff, being attended by families from across Wales and south west England, will be looking at the three main types of cardiomyopathy – hypertrophic, dilated and arrhythmogenic right ventricular.
The Cardiomyopathy Association, which has around 2,500 members, funds clinical care and campaigns for more health screening for affected families and more gene testing to find out who is at risk and to save lives.
For more information about cardiomyopathy, see the Cardiomyopathy Association’s website www.cardiomyopathy.org or call free phone 0800 0181 024.
Note to editors
For more information, please contact Sarah Dennis, Information Manager, Cardiomyopathy Association, 01494 791224 or email sarah.dennis@cardiomyopathy.org
Dedicated to Damian McLoughlin, who died age 20 of cardiomyopathy. This site is supported by Damian's family and friends.
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