Cam­paign to pre­vent oth­ers dy­ing like Nina

The Peterborough Evening Telegraph - - Uk & World Update - By KIRSTEN BEACOCK

A YOUNG woman who died trag­i­cally of a treat­able heart con­di­tion has be­come the face of a poignant cam­paign to raise aware­ness and pre­vent other young­sters dy­ing in vain.

Nina Je­len, of Town­gate East, in Mar­ket Deep­ing, had her life ahead of her af­ter grad­u­at­ing from uni­ver­sity in Liver­pool, when she died in her sleep aged just 23 of a rare heart con­di­tion called Long QT Syn­drome (LQTS) in 2005.

Now the par­ents of the bub­bly for­mer Bourne Gram­mar School pupil, Ivan and Paddy Je­len, are back­ing a cam­paign by Car­diac Risk in the Young (CRY) which sees an emo­tive new post­card launched next month, fea­tur­ing the pho­tos of Nina and 11 young peo­ple from across the re­gion who lost their lives sud­denly to pre­vi­ously un­de­tected heart con­di­tions.

The char­ity is also launch­ing a new ini­tia­tive in the UK to screen ev­ery 14-year-old, born in 1995, across the South East to try and pre­vent the con­di­tion which sees about 12 young peo­ple die ev­ery week

Nina’s mother, Paddy Je­len (60), has spent the last five years tire­lessly cam­paign­ing for greater aware­ness of the con­di­tion. She says if Nina been cor­rectly screened and di­ag­nosed with the con­di­tion, she could have been fit­ted with an im­plantable car­dioverter-de­fib­ril­la­tor – that re-starts the heart if it goes into an ab­nor­mal and of­ten lifethreat­en­ing rhythm, and would have en­joyed a rel­a­tively nor­mal life.

She said: “Nina’s case was a prime ex­am­ple as she slipped through ev­ery hole in the colan­der from the first missed di­ag­no­sis un­til her death.

“Since Nina died I have been mak­ing as much noise as I pos­si­bly can about this is­sue.

“There is a lot of med­i­cal talk for and against screen­ing, and money is ob­vi­ously an is­sue, but while the ex­pense may be mas­sive, at least you don’t lose a child – and the sci­ence is pro­gress­ing all the time.”

Fol­low­ing Nina’s in­quest in Stam­ford, Mrs Je­len crit­i­cised health au­thor­i­ties which failed to de­tect her daugh­ter’s heart con­di­tion and she and her hus­band, who is a sur­geon at Peter­bor­ough District Hos­pi­tal, re­ceived an apol­ogy from health bosses in Liver­pool for fail­ing to iden­tify the ab­nor­mal­ity.

Now Mrs Je­len, who 10 years ago re­trained as a nurse, is work­ing to raise aware­ness of the con­di­tion and she has trav­elled the length and breadth of the coun­try to de­liver lec­tures on the is­sue to med­i­cal stu­dents.

Chief ex­ec­u­tive and founder of the char­ity, Ali­son Cox, said; “As the recorded in­ci­dence of sud­den car­diac death rises it is time re­launch this pow­er­ful cam­paign to help em­pha­sise the im­por­tance of screen­ing, and the fact that so many of these tragic cases af­fect­ing fit and healthy young peo­ple could have been pre­vented.

“Eighty per cent of the young peo­ple who die from these tragedies have had no symp­toms and it is only through screen­ing that the con­di­tion can be iden­ti­fied.”

“These 12 faces (the post­cards) are just a snap-shot of the prob­lem and we need to keep up the pres­sure and en­gage sup­port from as many MPs as pos­si­ble to en­sure we are do­ing ev­ery­thing we can to pre­vent other fam­i­lies from ex­pe­ri­enc­ing sim­i­lar tragedies.”

CAM­PAIGN: Paddy Je­len, above, who is rais­ing aware­ness of heart prob­lems in young peo­ple af­ter the death of her daugh­ter Nina (right).

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