Heart disease prompts support to others

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AN Ashington woman who discovered she had inherited a heart disease is launching a support group to help other affected people.

Susan Saunders is holding the first meeting of the Newcastle Cardiomyopathy Support Group in February in a bit to help other families in the region who are affected by the heart muscle disease.

Susan, a 42-year-old pharmacy technician, has dilated cardiomypathy, which is a condition that causes the heart to enlarge and pump less efficiently, and was only diagnosed when she was an adult, after leading a normal life and having two normal pregnancies.

She was diagnosed with an enlarged heart when she was a baby but did not find out it was cardiomyopathy for many years.

Susan said: “I never thought there was anything particularly wrong and I did sports, ran about and forgot about it.

“I had two children and all was fine with both pregnancies and I continued to lead a normal life.”

Things changed seven years ago when Susan needed a general anaesthetic for an unrelated health problem.

She said: “I recovered from the operation but I started noticing I was more breathless than usual and suffering from fatigue.

“A cardiologist told me my heart was not working as well as it used to and put me on drugs to help.”

Cardiomypathy is genetic, and both of Susan’s children Sherilyn, 20, and Scott, 18, began regular heart checks for it. Sherilyn is unaffected but Scott, who was 14 when the first checks were done, discovered he had different problems with his heart, including a hole in the heart, and had surgery to correct them.

Susan’s older sister Wendy, who also had heart surgery as a child, has also been diagnosed with dilated cardiomyopathy but remains well.

Over the last year Susan, of Seaton Vale, has been suffering from more tiredness and has she been put on more drugs described how she is living life at a slower pace.

“I still do most things as before,” she said.

“But I now work part time and have learnt to rest more.”

Susan is a member of the Cardiomyopathy Association, a charity that provides information and support to affected families and raises awareness with the medical profession.

She said: “The charity has been a fantastic source of information and support to me over the last seven years.

“But for forty years I didn’t meet anyone else with the condition except my sister.

“So I thought there must be other people out there suffering alone and that’s what made me decide to set up a local support group.”

The Cardiomyopathy Association is backing Susan’s group and the main speaker at the first meeting will be Robert Hall, the charity’s chief executive and medical director.

He will be talking about the different types of cardiomyopathy – dilated, hypertrophic and arrhythmogenic right ventricular – latest treatments and the services provided by the charity to help families in the UK.

The condition is not rare and it is estimated that around 1 in 500 people has cardiomyopathy.

Three years ago Susan’s heart failure nurse referred the family for genetic testing to see if the gene mutation causing the disease in the family could be found.

Current technology has not been able to find theirs, but this may change as research progresses.

Once a gene mutation is found in a family other family members at risk can be identified.

To find out more about the group, email Susan at susandewhurst@btinternet.com or call the Cardiomyopathy Association on 01494 791224.

To find out more about cardiomyopathy, see the Cardiomyopathy Association’s website www.cardiomyopathy.org or call the helpline 0800 0181 024 (free from landlines).