September 2 2014 Latest news:
Monday, March 31, 2014
A mother whose 15-year-old daughter died from a rare heart condition has called for urgent action to boost the numbers of young people screened.
Melanie Webster, from Stowmarket, is campaigning to raise the profile of Sudden Adult Death Syndrome (SADS) – a condition which if not treated can result in a dramatic and often spontaneous death.
She said that more funding is needed to boost research into SADS to prevent further tragedies after her daughter, Lily, collapsed during a trampolining class in 2012.
Her comments come after leading cardiologist Sanjay Sharma said the number of young people – between 14-35 – who are dying each week from SADS is significantly higher than current estimates.
Mrs Webster and her family have organised two screening days at Lily’s school, Stowmarket High on July 1-2.
“I’m not surprised by the news because of the involvement I have had with the charity CRY (Cardiac Risk in the Young),” she said.
“Doctors are often not looking specifically for these conditions because they are seeing it as being rare in young people and they want to rule out the most common things first.”
She said awareness was being raised by the number of deaths being recorded as a result of conditions like SADS. Dr Steve Cox, is director of screening at CRY.
He said: “Every week in the UK, around 12 young people die suddenly from a previously undiagnosed heart condition. Four out of five of these deaths will occur with no prior symptoms – which is why CRY believes that screening is so vitally important.
“However, many experts believe that the actual number of deaths recorded could just be ‘the tip of the iceberg’ with many causes being wrongly recorded as asthma, epilepsy or even drowning.”
He said that in Italy, where screening is mandatory for young people engaged in sport, they have reduced the numbers dying by 90%.
The John Peel Centre for Creative Arts, in Stowmarket, is to hold a fashion show on June 1 which will raise money for CRY.