PRESS RELEASE,
October 21, 2007
Mother seeks more information about family's inherited heart disease
A Wolverhampton mother , who has lost several members of her family to the heart muscle disease cardiomyopathy, will be finding out more about the condition at a meeting in Birmingham on Saturday, November 3rd.
Karen Flavell, now 44, developed the condition as a teenager when she was a top roller skater, competing in European junior championships. After collapsing with exhaustion after four-minute routines, she was diagnosed with a heart murmur.
But she was not told she had hypertrophic cardiomyopathy, a serious heart condition that causes the heart muscle to thicken, is often inherited and is the biggest medical cause of sudden death in the under 35s.
Instead her cardiologist said she was "fit to skate all over the world and have ten children if she wished." She went on to become British Laides Free Skating Champion in 1980.
But after moving and becoming pregnant with daughter Katie in 1992, she saw a different cardiologist who told her cardiomyopathy was suspected. New tests confirmed the diagnosis. But though she had a difficult pregnancy and labour, she was never told about the seriousness of the condition nor that it was genetic.
The following year her father's cousin died suddenly, aged 42, from the condition. A year later Karen's duaghter Hayley was born after another difficult pregnancy. This time Karen asked if the condition was genetic but the paediatrician said it wasn't.
In the same week Karen's aunt died suddenly, aged 56, and the family began to investigate further.
A family tree dating back to Karen's great grandfather was drawn up and it appeared that nine relatives had died prematurely with a cardiomyopathy-related condition and five were living with the condition. These included Karen and her father Barry Jones, the most recently diagnosed and a builder who had been active all his life.
Tragically soon afterwards one of Karen's cousins died suddenly from the condition, aged only 24.
The family then got in touch with the Cardiomyopathy Association, a charity that offers information and support to affected families and is holding the November meeting at the Holiday Inn Birmingham in Chapel Lane, Great Barr.
Karen, from Wombourne, said: "From the charity I found out that there was in inherited heart disease specialist team at the Heart Hospital in London and I got referred there. This was the turning point in the management of my condition and I felt for the first time that my heart condition was being taken seriously. I underwent various tests and was told that I have been lucky to survive all these years without any treatment.
"I now take various medications and in 2001 I had an internal defibrillator fitted which will shock my heart if it goes into a dangerous rhythm. This has given me added confidence so I can continue leading a normal life, though avoiding the things that make me too breathless. Instead of doing voluntary work at my daughters' primary school, I went back to college and qualified to teach IT to adults, which I now do part-time. I also enjoy riding a bike and going on skiing holidays with the family."
The gene causing the problem in Karen's family has been identified and tests have shown Katie has not inherited the gene. Hayley does not want to be screened for it at present, so has regular heart checks to ensure she is not developing it. She is able to lead a busy life running for Tipton Harriers, playing netball and dancing.
Karen said: "Knowing the Cardiomyopathy Association is there for families like us has been a constant support, and I'm looking forward to attending the meeting to find out more about the latest treatments and research and to meet others who are affected."
The all day meeting, being attended by families from across the Midlands, will be looking at the three main types of cardiomyopathy - hypertrophic, dilated and arrhythmogenic right ventricular. Speakers include Dr Perry Elliott, a consulant cardiologist from the specialist team at the Heart Hospital.
Dedicated to Damian McLoughlin, who died age 20 of cardiomyopathy. This site is supported by Damian's family and friends.
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