Rugby hero Roy’s backing heart testing service
WELSH rugby hero Roy Bergiers has spoken about being diagonosed with a “life-changing” hereditary heart condition.
It comes as a new cardiac specialsist nurse for West, Mid and South Wales has been appointed by Hywel Dda and Abertawe Bro Morgannwg (ABMU) health boards to help detect deadly inherited heart conditions.
Around 30,000 people in Wales have a faulty gene that can cause an inherited heart-related condition.
This service in ABMU and Hywel Dda will ensure access to genetic testing for immediate family members of those diagnosed with hypertrophic cardiomyopathy (HCM).
The 68-year-old, from Carmarthen, played for Wales, toured South Africa with the British Lions and was part of the Llanelli side that famously beat the All Blacks in 1972.
He was diagnosed with HCM six years ago.
He said: “Receiving my diagnosis came as a shock to me.
“I’ve been fit and active all my life as a professional sportsman and a PE teacher.
“I was fit into my 50s, cycling, going to the gym and I’ve always been healthy.
“I had been experiencing palpitations and a high heart rate,so went to my GP.
“I had an ECG and I was diagnosed with atrial fibrillation which led to further tests and a diagnosis of HCM.”
It sparked immediate concern for his children and whether they were at risk.
Mr Bergiers added: “My first reaction was not to think about myself.
“My main worry was what this meant for my adult children.
“I have a son and a daughter, and they have both been tested, and to my relief neither of them has been diagnosed with HCM.
“They will continue to be monitored and this support has given me great peace of mind.”
Speaking about his diagnosis, he said: “It was life changing finding out I have a genetic heart condition and initially I struggled to understand my diagnosis and what it might mean for my family.
“The service I’ve had from the inherited cardiac conditions clinic in Swansea has been invaluable in helping me come to terms with my HCM and giving me and my family the support we need.”
Taking on the role of inherited cardiac conditions nurse specialist for both health boards is Louise Norgrove, who is also from Carmarthen.
Her role will support the existing inherited cardiac conditions service and ensure that more people receive the screening and treatment they need to prevent sudden death.
A cardiac nurse for 16 years, she will be based at Swansea’s Morriston Hospital and deliver the service across the region.
She said: “This is a really important service. It’s vital that immediate family members of those affected by HCM are referred for testing so we can carry out this cascade testing.
“It can be a frightening prospect so the care of a specialist inherited cardiac conditions nurse is vital to support them through the process.
“My role means we can now raise more public awareness and help hundreds more families, as the consequences of failing to identify those at risk of HCM can be fatal.”
The funding for the post has been provided by the Miles Frost Fund and the British Heart Foundation (BHF).
Morriston Hospital is the first in Wales to receive the funding from which will pay to improve genetic screening services to test for HCM.
Miles Frost, the eldest son of broadcaster Sir David Frost, died suddenly aged just 31 while he was out running in July 2015, from an undiagnosed heart condition HCM - which is believed he inherited from his father.
Dr Carey Edwards, consultant cardiologist at Morriston Hospital, leads the Inherited Cardiac Conditions service.
He said: “We are delighted that the BHF Miles Frost Fund has chosen to support our inherited cardiac condition service.
“The service we have developed at Morriston Hospital is small but growing. We expect this funding for a dedicated inherited cardiac condition specialist nurse and genetic counselling will dramatically improve access for diagnostic testing, family screening and genetic testing for the patients we look after across South West Wales.
“Developing a dedicated service will improve the speed and quality of care we are able to provide for patients with potentially dangerous conditions.”
Adam Fetcher, head of BHF Cymru, said: “The majority of people with HCM are undiagnosed and will have no symptoms. BHF researchers were among the first to find the faulty genes underlying the deadly heart condition which caused the death of Miles Frost.
“Thanks to this pioneering discovery, genetic testing for HCM and other inherited heart conditions is now available in the UK. Our aim is to ensure people who have HCM are identified and treated to prevent a needless loss of life.”
To find out more about the Miles Frost Fund or to make a donation to support the rollout of genetic testing for HCM, visit: www.milesfrostfund. com