York woman Claire Woodcock lives with a potentially fatal heart condition. She tells Rosslyn Snow why the diagnosis has not stopped her living her life...
IMAGINE living with the knowledge that your heart could stop at any time. This is the nightmare scenario 27-year-old Claire Woodcock, of Lockwood Street, York, has faced since she was diagnosed with hypertrophic cardiomyopathy at the age of 14.
The potentially fatal heart condition - signified by abnormalities and excessive thickening of the heart muscle - has left her suffering from angina, so she gets tired easily and has to pace herself.
The life-changing diagnosis meant that the once-sporty teenager was no longer allowed to even run for a bus, and her activity levels were closely controlled.
But rather than letting the condition rule her life, Claire is working, socialising and going on holidays like all her friends, while still taking good care of her health.
Now she has joined forces with her friend Katrina Ellis, also of York, to organise a lavish ball at York Racecourse on July 19 to raise money for the Cardiomyopathy Association and the Macmillan York Appeal, which aims to fund specialist cancer nurses in the city.
Former Huntington School pupil Claire, an occupational therapist, said that although her diagnosis was a blow to her and her family, it was the most positive thing that could have happened.
She says: "The diagnosis was given at the age of 14.
"I can't remember an awful lot about it, I remember being peeved that they wouldn't let me do sport and I remember PE teachers being tense about what I could do at school.
"But diagnosis is a positive thing, it allows you to adapt and get on with your life.
"Now I don't run for a bus - I've learned not to. There are some things I automatically decide you can't do any more such as trying to get up a flight of stairs too fast, or rushing because I am late.
"It's almost subconscious.
"But I go nightclubbing, I dance, I really enjoy it and I try not to worry, although I know the next day I'm going to be absolutely shattered."
Doctors started testing Claire from the age of 11 because she had a heart murmur, but did not discover the cause until she was 14.
However, she remained relatively symptom- free until suffering from angina at 18.
Five years ago she had a device fitted - like an internal defibrillator - which is designed to start working in the event of cardiac arrest.
It means that life-saving treatment begins immediately and Claire is given the best chance of survival.
Many sufferers are not so lucky. They are often young, apparently healthy and sometimes extremely sporty. In many cases their families do not discover they have this condition until after their sudden death.
This is what happened to Daniel Yorath, the son of former Leeds United star Terry, who died suddenly of hypertrophic cardiomyopathy at 15.
Terry Yorath is now patron of the Cardiomyopathy Association and his daughter, TV football presenter Gaby Logan, also supports the charity.
Claire says that when she was diagnosed she heard about Daniel Yorath - a story which filled her with dread.
But through her links with the Cardiomyopathy Association she discovered the condition can be controlled and monitored, if diagnosis is made early enough.
Claire says: "There are two strands to the charity. One is trying to raise awareness of the condition generally, both for the public and within the medical profession.
"The other is about offering information and support to its members.
"When I was being diagnosed the only stories we heard were when somebody had died. There's nothing worse than being told you have a condition and picking up stories about people who have died from it.
"But diagnosis was a positive thing for me. Who knows what could have happened if I hadn't found out? I would still have the same lifestyle as I did before.
"Now when I'm symptomatic I can be in and out of hospital, but I've managed to get through college, I've got a great group of friends around me and I get out and do things.
"My life is not that different to many people my age."
Fact file
Derived from the Latin, cardiomyopathy means "a disease of the heart muscle"
Right now four separate and distinct conditions of cardiomyopathy are recognised, including:
Arrhythmogenic Right Ventricular Cardiomyopathy - ARVC
Dilated Cardiomyopathy - DCM
Hypertrophic Cardiomyopathy - HCM Restrictive Cardiomyopathy - RCM
Cardiomyopathy affects around 200,000 people in Britain. It is the number one cause of sudden death in those under 30 and the main reason for heart transplantation
The Cardiomyopathy Association campaigns for medical action to help early diagnosis and prevent death.
Contact the association on 01923 249977, freephone 0800 0181024, e-mail cmaassoc@aol.com or visit www.cardiomyopathy.org
Updated: 09:13 Monday, May 19, 2003
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