Rugby hero Roy’s back­ing heart test­ing ser­vice

Llanelli Star - - Letters - Ian Lewis [email protected]­di­awales.co.uk

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

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