A Horley mother and primary school teacher has told of how she was suddenly diagnosed with a life-threatening heart condition for a new resource for young people plunged into the same position.

Lucy Challis, 30, is one of the authors of a booklet being released as part of the cause Cardiac Risk in the Young’s (CRY) annual awareness-raising week.

The cause is seeking to move the spotlight away from the many hundreds of tragically bereaved families who are supported by the charity, to focus on the growing numbers of young people who, thanks to greater awareness and early diagnosis, are learning to live with a diagnosis - often ‘out of the blue’ - of a potentially fatal heart condition.

The booklet, called ‘Young, Fit and Suddenly Diagnosed with a Life-threatening Heart Condition' and due to be launched at an event at the House of Commons, explains that despite reassurances of expert doctors, friends and family, such a diagnosis can have a devastating effect on these “apparently fit and healthy” young people. But it stresses that the reality can be very different, due to increasingly effective treatments and intervention and an ever-developing understanding about the genetics behind many of the conditions. Double-Olympic gold medallist Tom James, who was diagnosed with a heart condition known as Atrial Fibrillation in the run-up to the London 2012 Games, is featured in the booklet of ten personal essays from young men and women, who recount their stories of suddenly being diagnosed with a heart condition.

Lucy was diagnosed with a condition known as arrhythmogenic right ventricular cardiomyopathy (ARVC) following the death of her brother Stuart in January 2006.

He was aged just 25. Soon after Stuart’s tragic death, Lucy was fitted with an implantable cardioverter defibrillator (ICD), but nothing has stood in her way of her leading a full and active life.

A primary school teacher, she loves horse riding and last year gave birth to her first child, Oliver. Lucy said: “The hardest thing was dealing with other people.

“Some wanted to wrap me up in cotton wool and not let me lift a finger. Others found it difficult to accept I was actually suffering from a potentially life-threatening condition, as I had no outward signs.”

She said: “I understand why some people think young people can’t cope with being diagnosed, but I just hope that by becoming involved with this new resource that CRY has produced, and that by telling my story, I can let anyone else out there who might be going through the same experience that I have, know that you are not alone.

“Help and support is available and you don't need to be scared.”

It is estimated that one in 300 young people aged 35 and under who are tested by CRY are found to carry a potentially life-threatening condition. CRY’s pioneering screening programme now tests around 12,000 young people every year, which, combined with increased awareness, has led to more young people being routinely diagnosed.

CRY’s myheart network, started in 2002 and previously known as the ‘Surgery Supporters Club,’ has been exclusively developed to provide support and information to these young people and their families, who are recovering from heart surgery or who are living with a pacemaker or ICD.

Chief executive and founder Alison Cox MBE, said: “Since CRY was first established in 1995, much of my time, both as a CEO and as a trained counsellor, has been dedicated to supporting bereaved families. “However, as the charity evolved, it became clear that there was another group of people also desperately in need of support – but in a different way.”

She said: “They desperately need the reassurance that their lives are not over. “In fact, in some cases, following successful treatment, they are only just beginning. “But often, the only person who can do that convincingly is someone else who is going through the same unbelievable experience as them."

Regular meetings funded by CRY are held at venues around the UK and each session comprises group counselling, informal questions and answers with an expert cardiologist, and the chance to meet others who have been similarly affected. There is also a dedicated myheart website and newsletter.

Lucy concluded: “So many of my friends from the myheart network have done amazing things since becoming involved with CRY - spoken in Parliament, met celebs such as David Walliams, Pixie Lott and gold medallists, carried the Olympic torch, even being asked to ‘toss the coin’ at the start of the Wimbledon men’s final! “But much more importantly is the fact we’ve all met each other and will always be there for support.”

Website: www.c-r-y-org.uk or www.myheart.org.uk to download a copy of the Young, Fit and Suddenly Diagnosed with a Life-threatening Heart Condition, booklet. For more information about CRY’s myheart network call 01737 363222 or email: myheart@c-r-y.org.uk www.myheart.org.uk