A PAINSWICK mum whose life changed dramatically after she developed a serious heart muscle disease is speaking out to raise awareness of the condition.

Jayne Knowles-Smith, 48, of Pullens Road, said she was 45 when she began feeling breathless and tired.

At night lying down she felt like she was choking, which made it difficult to sleep.

Doctors initially thought she was suffering from asthma or dysfunctional breathing caused by the stress of her husband Bob's death just over a year before.

Then she started passing out – once while out for a meal with a friend.

"I felt so awful at times I thought I was going to die, but still looked so well it was difficult for my family and friends to understand," she said.

As she got worse her blood pressure got higher, her ankles became swollen and she could barely walk 100 yards. Simple jobs like washing her hair became too much for her.

Jayne, who has grown up children Katie, 28, and Michael, 24, said: "When I was visiting my late father at Stroud Hospital a nurse told me she was concerned about my breathlessness.

"That night breathing was even harder so I called an ambulance."

An ECG on the way to Gloucestershire Royal Hospital showed she had a heart problem and she was admitted to the cardiac ward.

Tests showed she had dilated cardiomyopathy, a condition that affects people of all ages including babies, and causes the heart to enlarge and pump less strongly.

The disease affects around one in 2,500 people and is the main reason for heart transplants.

A normal heart will pump out about 50 – 55% of the blood in it round the body during each beat. But when Jayne was diagnosed, it was pumping out only about 18% and she was suffering from fluid retention. She was put on diuretics and drugs to help her heart work more efficiently and soon her breathing improved.

After ten days she started to feel better and was sent home.

But she was still experiencing blackouts.

This year, despite trying to get on with life and enjoying holidays and short breaks with friends, her condition has fluctuated and she is now waiting to see experts in the condition at the Heart Hospital in London.

Because cardiomyopathy is often inherited and some of the genes that cause it have been found, she has also been referred to a genetics service at the John Radcliff Hospital in Oxford. Staff there will also look into the family tree to help them decide if other members of the family may be at risk and need to have regular heart checks.

"I am often very tired and I know my condition is not improving but my friends have been very supportive and I am determined to cope with it and live as full a life as possible," she said.

She has become a member of the Cardiomyopathy Association – a charity which provides information and support to those affected by the condition. It also funds clinical care and campaigns for more heart checks and genetic testing for affected families to find those at risk and save lives.

Jayne added: "It's very important to me that more people are aware of cardiomyopathy, its symptoms and its implications. That's why I am trying to raise awareness.

To find out more visit www.cardiomyopathy.org or call the freephone helpline 0800 0181 024.

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