Support group being set up

A BEXHILL man who suffers from the heart muscle disease cardiomyopathy is starting a support group for affected families across East Sussex.

Monday, 2nd April 2007, 10:07 am
Updated Thursday, 7th June 2018, 8:08 pm

Ray Harston, 64, from Tilgate Drive, Cooden, is holding the first meeting at St Martha's Church Hall, Cooden Sea Road, Little Common, on Monday, April 30th at 7.30pm.

Ray, a retired area manager for a timber company, has dilated cardiomyopathy, a type that causes the heart to enlarge and pump less strongly. But the support group will help people with all types of the condition.

Cardiomyopathy affects around one in 500 people of all ages, including babies, but often goes undiagnosed. It is the biggest medical cause of sudden death in people under 35 but if found can be treated with drugs and surgery, with most sufferers going on to lead long and full lives.

Ray is setting up the group with two local heart failure nurses '“ Jo Barrett from the Conquest Hospital, Hastings and Jules Grange from Eastbourne District General '“ and Toni Defreitas from the local cardiac network.

Ray, who was diagnosed in 1999, believes he may have suffered from the condition for many years.

He said, "At school, exertion in most forms didn't agree with me or me with it. During PE and games I perspired a lot and was short of breath. I always came last in the cross country and had to weed flowerbeds after school as a punishment. The flowerbeds were immaculate by the time I left."

His health caused fewer problems during Ray's working life as he spent most of his time driving. He suffered from palpitations but assumed they were normal.

But soon after he took early retirement in 1998 for personal reasons, Ray's cousin died suddenly and it made him think about his own health.

He said, "I decided to pay for a full medical examination and this led me to having tests at the Conquest Hospital which revealed I had cardiomyopathy.

"But thanks to the drug treatments I then received and the excellent care provided by my cardiologist and both Jo and Jules, my health has never been so good.

"I joined the Cardiomyopathy Association, a charity that offers information and support to affected families, and it also provided me with very positive and helpful advice about living with the condition."

During one of his check-ups last year, Jo suggested he join her in setting up a local support group.

Ray said: "I jumped at the chance. Not only can support groups provide a wealth of information to people with the condition, they also give them the chance to share experiences with others similarly affected."

Ray has got the backing of the Cardiomyopathy Association for his group, and speakers at the first meeting will include Dr Hugh McIntyre, local lead consultant for heart failure, and the Cardiomyopathy Association's chief executive and medical director Robert Hall.

Dr McIntyre leads the heart failure team at the Conquest Hospital. The team includes Jo Barrett, heart failure nurse, and Caroline Brennan and Sarah Terry, both community BHF heart failure nurses.

For more information about the new support group call the Cardiomyopathy Association on freephone 0800 0181 024. For more information about cardiomyopathy call the freephone number or see the website