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Newsletter Issue 11 Spring 2014

P3 Up the Pace P4 Your story - Clipper for CRY P6 Your story - YBfit P7 Your fundraising

myheart Booklet Launch CRY’s new myheart booklet “Young, fit and suddenly diagnosed with a life threatening heart condition…” was launched at CRY’s annual Parliamentary Reception on Wednesday 27th November 2013. The mood of this year’s Parliamentary Reception was positive yet reflective and allowed attendees to celebrate the many hundreds of young people whose lives have been saved due to screening, early diagnosis, greater understanding and improved awareness. The event was held in the Terrace Marquee at the House of Commons and CRY Patron Andy Scott attended as Guest of Honour. It was also a great honour to welcome, for the first time, CRY Patron Sir Steve Redgrave - whose best friend and training partner, Robert Hayley, died beside him in his home, from a previously undiagnosed heart condition, aged 17.

Upcoming events P8 About myheart

Former professional footballer (now football manager) Andy Scott, shared his own story about how his professional career came to an abrupt end when he was suddenly diagnosed - by CRY’s own Consultant Cardiologist, Professor Sanjay Sharma - with a potentially fatal heart condition. However, just as the authors from the myheart booklet had described, he told the audience that this had not held him back, just taken him in a different direction. Chief Executive and Founder of CRY, 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. “A diagnosis of one of these conditions is frightening for the young person affected and their family – particularly their parents. Many of those who come to us for advice often do so after the sudden and unexpected death of a parent, sibling or other relative which has possibly been the only indication that any form of genetic abnormality existed in their family. Feelings are running high – fear, anxiety, anger, insecurity. They desperately need the reassurance that their independence will not be Spring 2014

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myheart Booklet Launch jeopardised or their future will not be a miserable one. Often the only person who can convey that message convincingly is someone else who is going through the same experience as themselves.” It is estimated that 1 in 300 young people, aged 35 and under, who are tested by CRY are found to have 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. The facts sound terrifying – but the reality is thankfully a different story, due to the increasingly effective treatments and intervention; and an ever-developing understanding about the genetics behind many of these conditions. However, as the myheart booklet explains, despite the reassurances from expert doctors, friends and family, such a diagnosis can still have a devastating effect on these apparently fit and healthy young people. The myheart booklet features an introduction from double Olympic gold medallist and CRY Patron, Tom James MBE, who was diagnosed by CRY’s Consultant Cardiologist Professor Sanjay Sharma with a heart condition known as atrial fibrillation in the run up to the London 2012 Games. It includes 10 stories from young men and women who have written about their experience of suddenly being diagnosed with a heart condition. One of the myheart booklet authors, James Bailey (21) - a university student from Bristol - first became involved with CRY following his shock diagnosis of

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a hidden syndrome known as Wolff-Parkinson-White. He says; “My diagnosis in itself was a fluke. I almost didn’t bother going along to the CRY screening being held at my school. I was only 17, I had better things to do! But, I look back now and realise how lucky I was. I could have ended up being one of those sad stories, the ‘in memoriams’ you read about in the paper. Eight months later, I was cured. I could play football again, my parents could relax. But, that doesn’t mean my life wasn’t turned upside down. It took me ages not to panic if my heart ever started racing. The physical scars may have healed quickly but it still felt strange that everything had seemingly gone back to normal, whilst I was at the same time being acutely aware that things could have turned out so differently.” CRY’s myheart Network has been developed to provide support and information to these young people and their families - young people who have been diagnosed with a heart condition, who are recovering from heart surgery or who are living with a pacemaker or ICD (implantable cardioverter defibrillator). Regular meetings funded by CRY and a grant from Genetic Disorders UK are held at venues around the UK and each session comprises group counselling (to discuss any social problems that have been experienced); an informal Q&A with an expert cardiologist and the opportunity to talk to others who have been similarly affected. There is also a dedicated myheart website, www.myheart.org.uk and this newsletter, written for and by these young people, with a variety of articles to inspire and encourage others.


Up the Pace 2013 ‘Up the Pace’ is an annual education day held by Bristol Children’s Hospital for their patients with a pacemaker or ICD, and their families. Patients ranging from a few months old to 18 years old have the opportunity to attend workshops covering areas such as resuscitation and heart rhythms, as well as listen to a talk given by a young adult about their experience of growing up with a pacemaker or ICD. Different groups including charities and pacemaker/ICD companies are invited to hold stands so families can wander round taking leaflets and asking questions. Two of the myheart members, Amber Andrews and Rebekah Goddard, represented CRY and answer any questions people had about the myheart group. This is Rebekah’s account of the day: “‘Up the Pace’ on Saturday 9th November was a huge success for everyone concerned. Not only did it allow us a chance to help other parents and children in a similar situation to ourselves by giving them advice and support, but it also gave us the chance to understand just how many rare heart conditions there are out there.

were doggies with pacemakers, just like me!’ and it’s reassuring that she gets so excited about being so special. She sees it as something to be proud of and she was so pleased to go and tell the other kids how much she loves her device. I like to think that we all got something out of the day! Also attending were two of the largest suppliers of pacemakers and ICDs, who were on hand to chat to families about the technical side of having a device, allowing people to get answers about things which may not have been answerable by their own cardiologists. One rep even brought with him a fake see-through chest, so you could physically see how a device and its wires are fitted - a real eye-opener! I feel very blessed to have the opportunity to come to events like this one, knowing that we can also give a bit back and hopefully make a difference even to just a handful of families. I want to thank CRY for asking me to represent them at such an amazing day, and hope that with each year that passes it reaches out to even more people who can benefit from sharing and learning about different experiences.” Read Rebekah’s story at www.myheart.org.uk/rebekah-goddard

I have come across and learnt about a large number of heart conditions over the years, but Saturday’s event allowed me to meet a few more people, with even more conditions that were new to me. This makes CRY’s work more valuable than ever. The rarer the condition, the more alone you can feel, which is why ‘Up the Pace’ and the work that CRY does is of great value to so many families. Just knowing that someone else knows how you feel is a massive relief, both as a parent and as a child. I have now come full circle with the help of CRY. At frst, as a young person discovering how to cope with a newly diagnosed heart condition, and now as a parent myself, with a daughter who has inherited my condition. My youngest daughter, Jessica (age 6), was able to come along with me, and I think she too benefitted from the day. She told me in great excitement how ‘there Spring 2014

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Your story Clipper for CRY by Jennifer Hill My name is Jennifer Hill, I’m 32 and writing this article on my return from Australia. Holidays in Australia may conjure up images of sun, sand, surf, sightseeing and sipping cocktails but for me there was endless sea salt, giant ocean swell, soggy clothes, battling storms in the Southern Ocean, relentless sail hoisting and constant sleep deprivation! It may not sound as enticing, but for me it was the trip of a lifetime…I was participating in the Clipper Round the World 13-14 yacht race! The Clipper challenge involves twelve 70ft yachts racing around the world. The yachts are skippered by professionals but sailed by novices, who can sign up for the full circumnavigation or for individual ‘legs’. I went out to Australia to compete in Leg 4 – to sail from Albany to Brisbane. You’re probably wondering why I chose to do this?

point, on a whim, I applied to Clipper. I knew of the race and I had dreamt about applying someday, but I don’t think I had seriously considered it before. Spontaneously, there I was, applying, out to prove to myself that my LQTS didn’t have to stop me doing things.

Well, in 2011 I was diagnosed with long QT syndrome (LQTS). It was a shock, a scare and I struggled to accept it. I know I am incredibly lucky to have discovered my condition, but the diagnosis, the surgery and the adjustments put my life on hold and that left me feeling like an alien in my own skin. I didn’t feel so lucky and I suffered with depression for some time. At a low

I needed to draw a line under what had been a difficult few years and I needed to immerse myself in a new challenge. I had lost myself and I was striving to be who I was ‘before’. I needed to find the ‘new’ me, meet people who didn’t know about my condition and who would embrace that ‘me’. Most importantly though, I needed to fall in love with the new ‘me’. The Clipper race was my lifeline and to say it was incredible is an understatement. It wasn’t ‘plain sailing’ though… Initially my application was accepted. However, there was concern about the prospect of me being in such a physically demanding environment and without quick access to medical attention. My insurance was subsequently declined but I wasn’t going to give up. I persevered for 5 months to gather input from numerous cardiac consultants, prepare for every eventuality and to educate all those I needed to. It was ‘touch and go’ for a while, but just days before my first training commitment I got a ‘yes’ from the insurance company - I’m proud that

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Your story

I was resilient to the setbacks and that I was determined not to give up. In terms of the race itself; imagine that you’re locked in a caravan with a bunch of strangers on a fairground rollercoaster ride - one with an obstacle course along the way - and you’re tasked to navigate your way safely to the end. Add to that the necessities of cooking, cleaning and fixing things as you go. You sleep for a few hours at a time, in a confined bunk with noise that sounds like someone is playing the drums on your head. You rotate the cooking and when it’s your turn, you’re required to provide for 17 people, from a very basic ‘kitchen’. Cooking at a 45 degree angle isn’t easy when every few

clothes because you’re too exhausted to take them off and the clock is ticking, sleep is precious! On deck, you pull ropes and tug sails with all your might, whilst waves spray in your face and you can’t see or speak through it. Despite the gale force winds you help with whatever needs doing to maximise the boat’s performance, it is a race after all! You steer, using all your strength to hold the wheel to fight the power of the wind and sea. One wrong move or slip of the wheel and you’re off that rollercoaster track… Along with all of that though came beautiful sunrises, mesmerising sunsets, playful dolphins keeping you company when there is nothing but sea on the horizon, strangers that quickly became like family and who provided lots of love and laughter when you really needed it. There are fun times surfing huge waves, scary times during squalls and a real sense of freedom

minutes you and your masterpiece are flung up in the air! There is no shower and you never fully get changed; you do layer up for ‘work’ every 4 hours though, but often into wet clothes. You also occasionally sleep in those wet Spring 2014

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Your story and self-survival…the list could go on. It was challenging but exhilarating, truly magical and an experience I will cherish forever.

My ‘Clipper for CRY’ fundraising is nearing £5000. To read more about this visit www.c-r-y.org.uk/hill_clipper.htm

I’m thrilled to be writing this having achieved everything I set out to and more – I’m the happiest and most motivated I’ve been in a long time and that is because I’ve finally come to terms with living with LQTS, living with an ICD and living within my own comfort zones. Taking part in the race helped me to feel ‘normal’, I was just one of the team! I chose to tell people about my LQTS and I surprised myself in being able to do so comfortably and with such optimism. My decision to take part in the race was the best decision I’ve ever made: it gave me a chance to discover and love the ‘new’ me.

To follow the Clipper race visit www.clipperroundtheworld.com To read memoirs of my adventure please visit http://longitudeandlatitudeoflongqt.wordpress. com/ - coming soon!

I hope my story inspires others to overcome their difficulties and to believe that as young, ambitious people they don’t have to let their heart conditions hold them back. We just have to work out how to ‘navigate’ our way a little differently. I self-funded my trip and decided to raise awareness of and raise money for CRY throughout my Clipper journey.

YBFIT by Paula Simmonds My brother died suddenly, aged 31, in Australia. He was very fit and healthy. As a result, my family and I had to undergo genetic heart testing. Some of my family, including myself, were diagnosed with a hereditary heart condition called Brugada syndrome. Through this I was introduced to Cardiac Risk in the Young (CRY) – who support families affected by YSCD (young sudden cardiac death). I then became a member of CRY’s myheart Network and met other youngsters diagnosed with heart conditions. After attending myheart meetings and from discussions with other myheart members and the cardiologist, a common theme between members was the limited knowledge on how much physical activity can be done by youngsters who have heart conditions. I decided to become a fitness instructor with an aim to take ‘Exercise to Music’ classes at St George’s Hospital for the rehabilitation of younger heart patients, to help them back into physical activity. 6

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I did my training at YBFIT who supported my goals and aspirations throughout and I passed my ETM (Exercise to Music) Level 2 in June 2013, having exercised regularly at classes before I took my course. Since passing, I have been fortunate enough to share and cover classes of other fitness instructors at my local sports centre to help me practice my choreography and my teaching techniques. I have also started a ‘Body Conditioning Class’ at our local school on Thursday evenings. This is great fun and attendees have varied fitness abilities. I love teaching classes and have gained so much more confidence in doing so. I dedicated my first class to CRY and donated all fees to them, raising £133.


Your fundraising Chris Smith raised £1,030 from two fundraising events: “During the annual Preston Swimming Club Presentation Evening we held a Tombola and ‘Name The Teddy’ fundraising stand. We raised £368 from the event and would like to thank everyone for their kind generosity. On the 1st September 2013 I undertook my Windermere Wild Challenge. The challenge was to swim 10.5 miles from one end of Lake Windermere in the Lake District to the other, non-stop. Thankfully I made it, without stopping, in a time of 5 hours and 55 minutes. I managed to achieve a total of £662 in sponsorship for the swim.” Ben Lee raised £72.27 from taking part in the CRY Great Cake Bake: “On the 6th of December 2013 I took on the challenge of the CRY Great Cake Bake. I did it at my school’s annual Christmas Bazaar. I baked my heart out that week and raised £72.27. I got many fundrais-

ing items from CRY which were extremely helpful, like a sash, stickers, balloons, leaflets, posters, pens, wristbands and some CRY decorations for the cakes. I made fudge, cakes, cookies, meringues and a cheesecake. It took a good 2 hours worth of selling to make £72.27! I was diagnosed with long QT syndrome a couple of months ago after passing out in my swimming lesson. I now take beta blockers every day and I currently have a loop monitor implanted in my chest to see if I get any more problems. The hardest thing was coping with the fact I can’t play rugby any more. I had been playing for Dursley rugby club for 6 years, since the age of 5. Unfortunately we didn’t take any photos till the end, when most of the cakes had been sold!”

Upcoming events To find out more about any of the following events please email events@c-r-y.org.uk Brighton Marathon 6 April 2014 The Brighton Marathon is a road race run over the distance of 42.195 km or 26 miles and 385 yards. Please contact us if you would like to be a volunteer cheerer. Virgin Money London Marathon 13 April 2014 The largest annual fundraising event on the planet, where runners have raised over £500 million for charities since the race began in 1981. Please contact us if you would like to volunteer to help at the event. Just Walk 10 May 2014 Just Walk is an interesting charity sponsored walk for those wanting to fundraise. This walk is open to anyone who is keen to get their walking boots on and hike for CRY. You can choose either 10km, 20km, 40km or 60km routes, so something for everybody. It offers enthusiasts the chance to experience a breathtaking charity walk over the picturesque South Downs in West Sussex. Now in its 8th year! CRY Heart of London Bridges Walk 6 July 2014 Please join us on our 8th CRY Heart of London Bridges Walk to raise awareness and funds for CRY. The walk’s 8km (5 mile) route will start at Victoria Embankment

Gardens and finish at Hays Galleria, near London Bridge. Please contact us to register your interest or if you would like to volunteer. Prudential RideLondon – Surrey 100 10 August 2014 Starting at The Queen Elizabeth Olympic Park, participants will cycle the roads across London and into Surrey, following the famous road race route of London 2012, finishing 100 miles later on The Mall. Please contact us if you would like to volunteer to help at the event. CRY Durham Riverside Walk 4 October 2014 The 5th CRY Durham Riverside Walk will start and finish at Durham Amateur Rowing Club. The 7km walk is in the beautiful Wear Valley, following the river, with views of the city and cathedral. Please contact us to register your interest or if you would like to volunteer. CRY Awareness Week 22-30 November 2014 As well as the opportunity to hold an awareness stand or event, we look forward to building on the success of our Great Cake Bake. We are holding our third annual event on Friday 28 November. We will have special packs to send out which include recipes by top chefs, hints and tips and other goodies to help with your event. Please check with your cardiologist before taking part in physical activity. Spring 2014

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About What we can do for you

It is estimated that 1 in 300 young people aged 35 and under who undergo cardiac screening are found to have a potentially life-threatening cardiac condition. With the increase in awareness and more young people being diagnosed with cardiac conditions, even more people are likely to need emotional support and information to help them cope with their diagnosis.

Get in touch

myheart meetings are for those young people who have had - or may be undergoing - cardiac surgery; or those who have been diagnosed with a cardiac condition who would just like to link up with others with a similar experience to share. Upcoming Meetings: Midlands - Sunday 11 May 2014 North England - Sunday 29 June 2014 South East - October 2014 (TBC) If you would like to join myheart and receive meeting details, please email the myheart Coordinator at myheart@c-r-y.org.uk Or check out the myheart facebook page.

Useful links... www.myheart.org.uk

Parents of myheart group counselling

myheart (previously the Surgery Supporters Network) was created to offer support to young people (and their families) who have been diagnosed with a heart condition, who are recovering from cardiac surgery or perhaps living with a pacemaker or ICD. Members meet up to socialise, take part in group counselling and talk to an expert cardiologist in comfortable surroundings.

How to get involved

This is your newsletter. We need you to let us know about the issues that matter to you and what you want to see covered in these pages. We could, for example, have a Questions and Answers section to deal with important issues such as travelling advice, getting back to sport, recovering from surgery, etc. Tell us what you think. And, of course, we would like to include your own stories and photos. Please send these to us, along with your comments and feedback. We need your stories and news for future editions of the myheart Newsletter, please email to the newsletter editor, Alison Cox, at myheart@c-r-y.org.uk

CRY’s myheart group will now be holding parents group counselling sessions. This is for parents whose child has suddenly been diagnosed with a potentially life-threatening heart condition. These afternoon sessions will be facilitated by a trained counsellor who is experienced in working with families affected by heart conditions. The sessions are free to attend and provide the opportunity to meet other parents and discuss experiences in an informal, but supportive, environment. The parents group counselling sessions are held in Birmingham, Leeds and just outside London. These sessions are independent of the myheart meetings for young people diagnosed with a heart condition. Parents can attend regardless of whether their child attends the myheart meeting. If you are interested in attending any of these events, or would like more information, please contact the myheart Coordinator, on 01737 363222 or myheart@c-r-y.org.uk. The Surgery Supporters Network is now called myheart. This change of name reflects the support available to any young person (35 and under) who has suddenly been diagnosed with a heart condition. The change of name was inspired by the CRY Philips testmyheart tour www.c-r-y.org.uk/philips.htm

Cardiac Risk in the Young (CRY): Unit 1140B, The Axis Centre, Cleeve Road, Leatherhead, KT22 7RD Tel: 01737 363222 E-mail: cry@c-r-y.org.uk web: www.c-r-y.org.uk 8

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Myheart Newsletter - Issue 11