‘Passionate’ to save lives (From Ealing Times)

‘Passionate’ to save lives

11:15am Wednesday 24th January 2007

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A MOTHER-OF-TWO who cheated death five times is campaigning for more awareness of the heart condition she suffers from.

Tina Amiss, 43, of Bracewell Avenue, Greenford, has an inherited heart condition called cardiomyopathy - or, in plain English, an enlarged heart.

It is the biggest medical cause of sudden death in those aged under 35 and every week around four young people in the UK die from it.

Tina first discovered she had the potentially life-threatening condition in 1994, when she had a seizure and stopped breathing.

Her husband, Peter, a firefighter, managed to resuscitate her and it was initially thought she had suffered an epileptic fit.

But then an ECG revealed she had problems with her heart and a condition called dilated cardiomyopathy was diagnosed.

With this condition, sufferers have an enlarged heart which pumps less effectively, but if it is found in time it can be treated with drugs and surgery.

Tina, a physiotherapist, said: "Despite working in healthcare for many years I had never heard the term cardiomyopathy, let alone knew what it was."

Tina was initially treated with drugs and her condition improved. She had two children - a daughter, Conah, now ten, and a son, Alexander, seven, without any complications.

But in 2002 she had a suspected cardiac arrest while she was asleep, but again her husband was there to resuscitate her.

After this, doctors decided to give her an internal defibrillator. This life-saving tool, similar to a pacemaker and fitted in the chest below the collar bone, detects dangerous heart rhythms and can shock the heart back into a normal rhythm.

Tina said: "This device was given to me at huge expense to the NHS and my family and I are very grateful for it.

"I have had three more cardiac arrests and each time it has done its job."

While under the care of the Heart Hospital in London, Tina was offered genetic testing as part of a research project. The test managed to identify the gene mutation in her family and revealed she had a different type of cardiomyopathy - arrhythmogenic right ventricular cardiomyopathy.

In this condition heart cells become damaged and are replaced by fat and scar tissue. Once a gene mutation has been identified other members of the family can find out from a blood test if they also have the mutation.

Tina said: "My parents, siblings, children, aunts, nephews, nieces and cousins have all been tested and several of them have been found to carry the gene and they are now receiving appropriate care."

In 1996 Tina decided she wanted to help other families with the condition and joined the Cardiomyopathy Association's network of people who offer support on the telephone.

She and her family also began raising money for the charity to help it develop its services.

She said: "I am very passionate about wanting to help the Cardiomyopathy Association in its work. The charity's aims of raising awareness of the condition with the general public and the medical profession are vital.

"Unfortunately, genetic testing is not currently available on the NHS and some affected families are not getting the regular heart screening needed.

"Cardiomyopathy is not rare - around one in 500 people are thought to have it - but with more awareness, more genetic testing and heart screening for affected families, many lives can be saved."

• For more information about cardiomyopathy, call the Cardiomyopathy Association on free phone 0800 018 1024 or see the website www.cardiomyopathy.org

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