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Newsletter Issue 10 Autumn 2013 News and information for young people suddenly diagnosed with cardiac conditions

P2 Bridges Walk P3 Your story MedicAlert Partnership

Song For Stevie On a warm evening in June, CRY was privileged to be involved with a truly inspiring evening of arts and entertainment at the “Song for Stevie” concert, which was held at the Rose Theatre, Kingston Upon Thames. The event aimed to raise awareness of heart conditions, reinforcing CRY’s message of the importance of screening and getting treatment. The concert was held in memory of Stevie Jivani, who died suddenly aged 19 from a previously undiagnosed heart condition in April 2012, and was organised by Stevie’s parents, Maureen and Naz. The performance featured dancers, musical theatre, bands and a wonderful variety of poetry read by acclaimed writers, all of whom were friends of the Jivani family. Those performing included the up-and-coming band Miccoli, who travelled down from the Midlands to be part of the event. Their band consists of Francesca

P4 About myheart

and her twin brothers Adriano and myheart member Alessandro, who has Wolff-Parkinson-White syndrome (WPW). In 2009, Alessandro collapsed just after performing on stage. He has had ablation surgery four times and is hoping his latest report from the cardiologist will give him the ‘all clear’. The band’s inspiring performance was amazing and as they continue to gather momentum, their fan base increases and they go from strength to strength. Over 600 guests attended contributing to this positive and vibrant event which was a moving tribute to Stevie. It was a poignant, uplifting evening. We were proud to be associated with such a magical event, which raised almost £9,000. Autumn 2013

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CRY Heart of London Bridges Walk 2013 It seems as though three records may have been broken on Sunday 7th July 2013! The first British winner of the Wimbledon Men’s Singles in 77 years; soaring temperatures making it the hottest day of the year so far; and over 1,200 willing walkers travelling to central London to take part in the annual CRY Heart of London Bridges Walk – the largest number of participants the charity has ever seen.

old Jack – an aspiring footballer – was treated promptly and is now back playing professionally at Gillingham Football Club. Other myheart members who took part in the walk were Sian Donnelly, Joseph Tanner, Paula Simmonds and daughter Chloe.

This was the 7th year that the event had taken place – coincidentally on the 7th day of the 7th month, with the course crossing 7 Thames bridges! Most importantly, it was incredibly moving to see so many people coming together, holding their CRY balloons and wearing personalised T-shirts, to walk in memory or support of a friend or family member. It was also an opportunity for people to meet up with friends, CRY staff and those who have supported them, as well as commemorating CRY’s ongoing work to help reduce the incidence of young sudden cardiac death. Walkers facing the searing heat, began congregating in Victoria Embankment Gardens from 9.30 am, where members of the CRY team, as well as lots of enthusiastic volunteers, were waiting to meet and greet them. Along with many of CRY’s long standing supporters and participants in this flagship event, there were hundreds of new supporters who had made the journey to London, having been affected by the tragedy of young sudden cardiac death.

Joseph Tanner, Paula Simmonds and team

Prior to ‘lift off’ at 11 am, introductions and speeches were given by CRY’s Founder and Chief Executive, Alison Cox MBE and CRY Patron Kathryn Harries, who also led a minute’s silence. Kathryn first launched the event in 2007 and has been a keen supporter ever since. This was followed by a warm-up with fitness instructor Margaret Fernandes from Eden Health Fitness Club, Ealing, who kindly donated her time and boundless energy (especially impressive on such a hot day)!! The groups then filtered through the park gates and took their first steps along the Thames – heading towards Hays Galleria, where CRY’s welcoming party awaited. At the finish, walkers were presented with a certificate of thanks and fresh fruit punch made by Koula, a long standing CRY volunteer.

Lesley Sellens and Team

Whilst most of those participating walk in memory of a friend or family member, there are an increasing number of families walking to support a young person who has been diagnosed. One such group was led by thankful Mum, Lesley Sellens from Kent, whose son, Jack, was identified with a heart abnormality early last year during a CRY screening event. Thankfully, 16 year 2

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CRY Patron John Barrowman, said of the event; “I’m so pleased to be supporting the charity’s ongoing programme of activities and fundraising, especially its flagship event. Now in its 7th year, the Heart of London Bridges Walk has raised almost £370,000. It is a very moving day that brings together hundreds of people and families whose lives have been shattered by sudden cardiac death, but who share a commitment to raising awareness for CRY.”


Your story Danielle Cummings Hypertrophic Cardiomyopathy I was diagnosed with hypertrophic cardiomyopathy as a baby. My dad and the majority of his family suffered from the disease. It was my parents’ decision for me to undergo genetic testing, which came back positive for having the gene but not the disease. While growing up I had biannual checkups at Great Ormond Street Hospital, where I would have ECGs, ECHOs, exercise tests and often had 24-hour ECG tapes that I would have to wear at home. From a young age, I had a murmur and then thickness to the heart during my mid-teens. Unfortunately, when I was 7, my dad passed away due to the condition and at the age of 16, I was advised to have an implantable cardioverter defibrillator (ICD) fitted as a precaution. This was really daunting and I didn’t want to go through with the operation. One of the cardiac nurses at Great Ormond Street Hospital introduced me to CRY. Through

CRY, I was put in touch with someone from the myheart network who had been through a similar experience. Speaking with her made a huge difference. I was able to ask her questions and she talked me through the procedure of having the ICD implanted. Even though I had all the family support I could ask for, speaking to someone who knew what I was going through felt a little more reassuring. After the operation a whole weight was lifted off my shoulders and I could get back to living a normal life. I’ve never let the disease affect my life; this is a part of me and not who I am. Family and close friends know what I have in case anything was to ever happen to me, but anyone on the outside wouldn’t be able to tell anything was wrong with me. I continue to exercise and go out with friends but am always aware of my limits. Earlier this year, five years on from the original operation, my ICD battery ran out and I had another operation to change the box. With updates in technology and medicine, the surgeons opened the same scar and it healed back next to nothing. I’m back to living a normal life attending university and don’t have to worry about anything until my next check up.

MedicAlert Partnership CRY and MedicAlert have been in partnership for a year now, with several myheart members signing up to MedicAlert with our promotional offer. It is recommended that anyone with a hidden medical condition carries a form of identification detailing their condition and any medication they are on. This could be in the form of a card placed somewhere visible in your wallet/purse, or an identification bracelet, such as a MedicAlert bracelet. MedicAlert is the only registered charity that provides a life-saving identification system for people with hidden medical conditions and allergies. Each member receives an Emblem engraved with their main medical condition, vital details, a personal ID number and a 24 hour emergency telephone number allowing emergency or medical professionals to access their details from anywhere in the world. This 24-hour emergency service is housed within the London Ambulance Service, where trained staff relay your full MedicAlert emergency medical record to the first responder. Wearing MedicAlert identification means in an emergency, medical personnel have instant knowledge of your medical condition and with one phone call to the emergency number, access to your emergency medical

record, along with information such as your name and address, doctors details or implant information after quoting your ID number and clearing security checks. This 24 hour emergency phone line has an annual charge of £30. Full details of the caller are taken, including the nature of the call and the response given. When joining MedicAlert or updating medical information, calls are dealt with by trained nurses, who take and assess all your medical information to ensure it is correct and then decide what information needs to be included on the embelm. MedicAlert has a wide selection of emblems to choose from, with prices starting at £19.95. MedicAlert is offering a free stainless steel classic bracelet (worth £19.95) or £19.95 off any other emblem in their range to myheart members. To receive this offer you will need quote a special discount code. To receive this discount code please contact myheart coordinator Bev on 01737 363 222 or via myheart@c-r-y.org.uk. The annual membership fee of £30 still applies. For more information about MedicAlert please visit www.medicalert.org.uk. Autumn 2013

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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: South East - Sunday 23 February 2014 Midlands - Sunday 6 April 2014 North England - Sunday 29 June 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 alison@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 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 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.

Cardiac Risk in the Young (CRY): Unit 1140B, The Axis Centre, Cleeve Road, Leatherhead, KT22 7ND Tel: 01737 363222 E-mail: cry@c-r-y.org.uk web: www.c-r-y.org.uk 4

Autumn 2013

Myheart Newsletter - Issue 10  

Issue 10 of the quarterly magazine produced for the myheart support network for people aged 12 - 35 living with a heart condition.