Newsletter Issue 8 Winter 2012 News and information for previously fit and healthy young people living with cardiac conditions
Olympic and Paralympic Torch Relays In 2009, at the age of 17, James Bailey was diagnosed with Wolff Parkinson White (WPW). This was found during a CRY screening held at his school and was a total shock to James who considered himself to be very fit and sporty. He was due to go on a football tour only a month later but was advised it would be unwise to go, which was a huge disappointment. He was advised to stop sports and was put on medication. James subsequently underwent two ablations that same year. Fortunately the second one was successful. Despite the seriousness of the situation, James considered himself to be very fortunate that his WPW had been discovered and treated and was very keen to do all he could to raise both funds and awareness of such conditions. He therefore arranged charity auctions to raise money and support the work of CRY. He also took every opportunity to raise awareness of such conditions and to campaign for ECGs to be available to those particularly at risk. James says: “It was a great honour to carry the Olympic Torch and play a part in the London Olympics. Despite being extremely nervous beforehand about my ‘moment to shine’ and worrying about dropping the Torch, everything went really well and it was incredible seeing how many people turned up to cheer me and the Torch on. It really was a once in a lifetime experience and a moment I will never forget. Thanks to the local media coverage of the event I hope my participation in the Torch Relay was able to help further publicise the invaluable work of CRY. Additionally, thanks to people donating money to have a photo with my Torch, I was able to raise some more cash to help such a good cause.”
P2 CRY Heart of London Bridges Walk 2012 P3 Your story P4 About myheart
Tony Eames (32), a member of CRY’s myheart group, played an exciting role in the lead up to the London 2012 Paralympic Games by carrying the Torch on Monday 29th August as part of its 92 mile journey across Britain. Tony, from Wokingham, also received widespread media coverage as he stood on the steps of the Shree Swaminarayan Hindu temple in Willesden, Brent. He was interviewed on both ITN and BBC news. Tony says: “Taking part in the Paralympic Games Torch relay was a great achievement and one that signifies the progress I've made since being diagnosed with long QT syndrome (a potential cause of sudden death syndrome) aged 12, which caused sudden cardiac blackouts. For eight years my family doctor had treated my fainting attacks as epilepsy and attention-seeking panic attacks. It was suggested that I be sent to a psychiatric institution, something my parents refused to allow. No-one had tested my heart and all the time I was at risk of a sudden fatal attack from the rare heart condition. “Following various investigations I was diagnosed and had the condition controlled by daily beta blockers and had a pacemaker fitted aged 18. It was difficult to overcome the challenges, however I am delighted that thanks to the medical support, today, I live a full and energetic life, focusing on achieving personal goals.” Winter 2012
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CRY Heart of London Bridges Walk 2012 After the wettest summer since records began, the sun shone down on the 940 people who had travelled to London on Sunday 15th July to take part in the 6th annual CRY Heart of London Bridges Walk. Walkers began congregating in the Victoria Embankment Gardens from around 9am – and they couldn’t miss the team from CRY who were all waiting to meet and greet them at the gates, with their bright red T-shirts and the many balloons and banners tethered to the gazebos! Soon, more and more walkers started to arrive – encouraged by the rare blue skies – and before long it became apparent it was going to be the biggest and best ‘Bridges Walk’ to date! As well as many of CRY’s long-standing supporters and participants in this flagship event, there were many new faces and supporters who had made the journey to London, having been affected by the tragedy of young sudden cardiac death; been diagnosed with a cardiac condition; or just wanting to support CRY. This year, a team from the myheart network also joined the walk to help raise awareness of cardiac conditions in the young.
instructor Kirk Douglas and then the official start by former ITV Gladiator (Zodiac), Kate Staples. The groups then quickly filtered through the park gates and took their first steps along the Thames – heading towards Hays Galleria, where CRY’s welcoming party awaited. The first few groups and individuals arrived back by noon, with others taking a slightly more leisurely stroll! The myheart team consisted of Lucy Challis, Emma Jackson, Rachael Marchant, Anna Richens, Paula Simmonds and Joseph Tanner.
Paula Simmonds took part in the CRY Heart of London Bridges Walk 2012 “It was great to walk the CRY Heart of London Bridges Walk 2012 in support of CRY, in memory of Craig Beck. My friend Zuzana Topham, my mum and her husband, my sister and my daughter, who is seven years old, joined me and we walked with the myheart group. CRY has supported us since we were first referred to them after my brother suddenly died. It was a lovely experience to do the walk, we met so many people in similar situations as us. We felt supported and felt we helped support others, while raising money to help save other lives, and the continuation of research into genetic heart conditions. This walk gave us the opportunity to raise awareness of CRY, with people sponsoring us from places of work, local school, friends and family.
myheart members: Anna Richens, Lucy Challis, Emma Jackson, Joseph Tanner, Rachael Marchant, Paula Simmonds and her daughter.
Whilst following the same route as previous years, the 2012 Walk took in some new sights, including the world famous ‘Shard’ which towered high and glistened in the Sunday sunshine. Before the walkers set off at 10.30am, there were introductions from CRY Patron Kathryn Harries (who first launched the event back in 2007 and who has been a keen supporter ever since) and CRY’s Chief Executive and Founder, Alison Cox MBE. This was followed by a warm-up with fitness 2
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Even though this walk was emotional it was a pleasure to be involved in.” Paula Simmonds.
Fundraising
Anna Richens, Paula Simmonds, and Zuzana Topham took part in the CRY Heart of London Bridges Walk 2012 and raised £312. Joseph Tanner took part in the CRY Heart of London Bridges Walk 2012 and raised £470.70.
Cardiac Risk in the Young
Your story Sarah Bond - Brugada syndrome I'm Sarah. In January 2012 I was diagnosed with a heart condition known as Brugada syndrome, something that I have had since birth yet was completely unaware of living like any other healthy 31 year old woman; going to the gym, work and starting off newly married life with my wonderful husband James. Looking back now it still seems a bit unreal, but I know how lucky I am to have been diagnosed. Here is my story: “I had just finished a busy and stressful shift at work, I'm a nurse you see, and gone home. I remember being sat with James and feeling my heart start pounding with really strong palpitations, and my chest feeling uncomfortable. I was also feeling faint and looking sweaty. I did not faint and it lasted about 30 seconds which seemed forever. I knew that it wasn't right to feel like that so we went up to A&E. I had an ECG which the nurse said looked OK and I felt a bit of a timewaster. However, the doctor then came in and that's when I realised something was wrong with my heart. There were changes on my ECG and I was admitted to a high dependency unit for heart monitoring as he thought I had something called Brugada syndrome. I didn't understand what or how serious it was at the time, I just got told it can make my heart beat fast and that it was a genetic condition. After waiting 3 weeks and being monitored, I was transferred to a specialist heart hospital in Manchester where I met with my doctor. I began to realise the seriousness of this condition, and that I would have to have an ICD fitted. I remember feeling quite upset at the time and was worrying about it sticking out of my chest and the scar and how my life was going to change. It was the shock of me being fit and healthy and then this, but I’m glad it has been picked up now. I had a Flecainide challenge prior to my surgery to see if it would provoke changes on my ECG, which would indicate true Brugada syndrome. I remember feeling very anxious throughout but the doctors and nurses looked after me. I then had my ICD implanted under my muscle, which was a little sore at first, and returned back to work a month later. Although I had my doctor and specialist nurse, who is brilliant, to give me quite a lot of information and answer my questions, I will be honest, I didn't really absorb the information and remember feeling fed up and alone the first month I had my ICD. Cardiac Risk in the Young
Sarah and James Bond
I went to my heart hospital meeting for patients with ICDs but hated it as they were a lot older than me (around 60-80) and they were feeling sorry for me being young. This left me feeling very isolated. Through looking on the internet my dad found CRY which I can honestly say has been a huge help with my recovery from being diagnosed and having my ICD fitted. I have gained a lot of information about my condition, what drugs I should avoid and being sensible with exercise, which I am. At first I was worried about having sex in case my ICD went off - you do when you are young! I went to the myheart meeting and it was the best thing I did. Being able to talk with people my age with ICDs and conditions similar to mine, it was more like chatting with my friends than a meeting and it helped me offload all my worries to people that knew how I really felt. Life now has changed for the better, I know how lucky I am to be here and how my defibrillator is there protecting me if I ever need it. I also wear my tops and dresses with confidence and feel quite proud of my scar. My only advice is: enjoy life, it’s what you make it!”
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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.
We need your stories and news for future editions of the myheart Newsletter, please email to the newsletter editor, Mair Shepherd, at mair@c-r-y.org.uk
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. If you would like to join myheart and receive meeting details, please email the myheart Coordinator, Karla Griffith, at myheart@c-r-y.org.uk Or check out the myheart facebook page.
Useful links... www.myheart.org.uk
“I was diagnosed with long QT and given a pacemaker which has now become my best friend. I thought I’d never get used to it, but now I wouldn’t ever consider not having it. It’s a good conversation starter!” Rebekah Goddard 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, living with a pacemaker or ICD, 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.
Parents of myheart group counselling CRY’s myheart group will now be holding parents group counselling sessions. This is for parents whose previously fit and healthy child has suddenly been diagnosed with a dangerous heart condition. The afternoon sessions will be facilitated by a trained counsellor who is very experienced in working with families affected by dangerous heart conditions. The sessions are free to attend and will give the opportunity to meet other parents and discuss your 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 Karla Griffith, 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 that support is available to any previously fit and healthy 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.
Cardiac Risk in the Young (CRY) Head office: Unit 7, Epsom Downs Metro Centre, Waterfield, Tadworth, Surrey KT20 5LR Tel: 01737 363222 Fax: 01737 363444 E-mail: cry@c-r-y.org.uk web: www.c-r-y.org.uk 4
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