25th March 2012
A meeting of the nationwide support group myheart was held in Reigate on Sunday 25th March, with the aim of reaching out to local people aged 12-35 who believed themselves to be fit and healthy but have been suddenly diagnosed with and treated for a heart condition.
Run by CRY, myheart is a specialist network of regional groups that offers help, support and information to young people coping with the diagnosis of a heart condition.
For many, the news will have come as a complete shock with little or no warning. For others, the diagnosis may also have meant the immediate end to a promising sporting career – leaving both the young person and their family having to ‘pick up the pieces’ of shattered dreams and aspirations.
Dr Michael Papadakis – a former CRY Research Fellow – donates his time at the myheart meetings in the South East, to talk to those young people attending about any medical queries they might have about their condition.
One member of the myheart network is 30 year old Joseph Tanner, who was diagnosed with Brugada syndrome in 2008 after suffering a cardiac arrest at the end of the Hastings half marathon.
He says, “My first group meeting was in 2009 and I have gotten something different out of every meeting. I’ve learned things about my condition, things we’re entitled to and we are able to discuss our feelings. It’s good to meet other people that feel the same. Through these meetings I’ve met lovely people and when I’m having a tough day, I write a Facebook status and people from myheart always give support.
“I continue going to the meetings because I hope to be a support network for the new people that attend. When you are first diagnosed with a condition, you feel like you can’t do anything, you go through the ‘why me’ syndrome. After a myheart meeting, you realise you’re not the only one and gain some new friends and hopefully feel a little better.”
Every week in the UK, 12 young people (aged 35 and under) lose their lives to sudden cardiac death – a statistic that is believed to be a conservative estimate. However, with CRY’s ongoing commitment to proactive cardiac screening, especially in schools and sports clubs, more and more young people are being diagnosed and left facing the prospect of living with and managing a serious heart condition.
Chief Executive and Founder of CRY, Alison Cox MBE, says; “You cannot underestimate the importance of being able to speak to and meet up with other young people who have been through the devastating experience of being told you are suffering from a previously undiagnosed heart condition. Whilst parents initially experience relief that their son or daughter has been safely diagnosed ahead of any potentially fatal consequences, both they and the young person diagnosed then have to work through a rollercoaster of emotions as they begin to assess the enormity of their diagnosis. My experience is that support and advice from others in the same situation makes an enormous difference to how they manage their diagnosis.”
She adds, “We are also very lucky to have a number of young and inspiring Patrons who many of our young supporters admire – especially those like Pixie Lott, who are fantastic ambassadors to our young patients.”
Young people who come along to myheart meetings will be able to meet others with similar conditions and talk about their experiences in a supportive environment. They have the opportunity to talk to a specialist consultant cardiologist and trained counsellor, asking their questions in an informal, relaxed and confidential setting. Parents and partners are not permitted which gives the young people the necessary freedom to talk to experts about anything that is worrying them and about the impact of living with their heart condition.
A separate and independent group counselling session for parents who have a child who has been diagnosed will be included at this event for the first time. For more information or to book a place, please contact Karla Griffith on 01737 363222 or [email protected]
For more information about myheart meeting dates visit www.myheart.org.uk
For more media information or to arrange an interview with a local young person involved in the CRY myheart initiative please call Jo Hudson or Heather Churchouse in the CRY press office on 020 8786 3860 / 0770 948 7959 or email [email protected]
