Campaign to prevent others dying like Nina
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).