Support for young people diagnosed with life threatening heart conditions www.myheart.org.uk myheartnetwork @myheart_UK

myheart is a support network set up by

Who We Are & What We Do

The myheart network is a support group created by the UK charity, Cardiac Risk in the Young (CRY). It was launched in September 2002 to support individuals living with a potentially life-threatening cardiac condition. We understand that being young and suddenly finding that you need to be treated for a heart condition is not easy. CRY’s myheart network provides personalised help, support, and information to individuals between the ages of 12 and 35 who have been diagnosed with a potentially life-threatening cardiac condition. myheart is a support system for individuals to help develop

effective coping strategies and build relationships with others going through similar experiences. The network was developed in response to feedback from young people who found that support groups available were not effective in helping them deal with issues such as fitting of ICDs, pacemakers and undergoing ablation surgery. www.myheart.org.uk

Conditions covered Arrhythmogenic right ventricular cardiomyopathy (ARVC) Atrial fibrillation Brugada syndrome Catecholaminergic polymorphic ventricular tachycardia (CPVT) Coronary artery anomalies Coronary artery disease Dilated cardiomyopathy (DCM) Hypertrophic cardiomyopathy (HCM) Long QT syndrome (LQTS) Marfan’s syndrome Myocarditis Progressive cardiac conduction defect (PCCD) Short QT syndrome (SQTS) Wolff-Parkinson-White syndrome (WPW) 1

www.myheart.org.uk

Literature & Information

Cardiac Condi ons in the Young: From ARVC to WPW

myheart booklet

The myheart booklet was launched in November 2013 and has been a source of great support for the members since then. The booklet is introduced by double Olympic gold medallist, Tom James MBE, who Young, Àt and suddenly was diagnosed with a diagnosed with a life threatening heart heart condition known condition . . . as atrial fibrillation in the run up to the London 2012 Games. Also included are 10 personal ‘essays’ from young men and women who recount and talk through their own experience of suddenly being diagnosed with a heart condition. Tom James MBE Olympic Gold 2008/2012

This booklet provides medical information for a young person who has been diagnosed with a cardiac condition or has been referred to a cardiologist for further tests, as well as their family and relatives. It has been written by Dr Elijah R Behr, Dr Michael Papadakis and Professor Sanjay Sharma. The booklet ●

explains how the heart works and how blackouts and cardiac arrest may be caused

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explains what the arrhythmia syndromes or channelopathies are

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explains what the cardiomyopathies are

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explains what Wolff-Parkinson-White syndrome, Marfan syndrome, myocarditis, coronary artery anomalies and coronary heart disease are

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explains why it is important that blood relatives of a person with such a cardiac condition should have a medical examination and tests to find out if they have inherited the same condition

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describes the tests your doctor may ask you to have

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offers advice on how to live a healthy lifestyle if you are found to have one of these heart conditions

Newsle ers

We send out regular enewsletters to members and keep them updated about the latest myheart developments. A hard copy newsletter is sent out at the end of the year and is a round-up of the events in which our members participated and raised awareness of CRY and myheart.

myheart Newsletter 2016

News and Events | Raising Awareness | Members’ Stories

In this

Newsletter What our members have been up to Other news

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myheart Meetings

Tel: 01737 363222

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CRY events attended by members

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Members’ stories

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Email: myheart@c-r-y.org.uk

@myheart_UK

Websites: www.myheart.org.uk

myheartnetwork

myheart newsletter.indd 1

Newsletters are written for and by myheart members. Including stories about their personal experiences of living with a cardiac condition. www.myheart.org.uk

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myheart Coordinator

Please contact the myheart coordinator if you have a condition and want to know more about myheart by calling on: 01737 363222 or by emailing myheart@c-r-y.org.uk .

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Online & Social Media

myheart website

www.myheart.org.uk has clear information on different cardiac conditions, tests, and their treatments and contains a number of personal stories from our members who have shared their own experiences about coping with the diagnosis of a cardiac condition as a young person. The website also contains a downloadable version of the myheart booklet.

underwent certain procedures. They have shared their experiences to help other young people who are living with a diagnosis or having cardiac tests.

Members’ only area on the website

The website is accessible to all however the members’ area is exclusively reserved for myheart

Videos from CRY’s myheart Cardiologist

myheart has a series of useful videos on our website which answer frequently asked questions, including on exercising with a cardiac condition, lifestyle advice for people with ICDs, on medication and family screening information after a diagnosis in a young individual. The questions have been answered by CRY’s myheart Cardiologist, Dr Michael Papadakis and can be viewed at: myheart.org.uk/faqs

Videos from myheart members

We understand that as well as medical information, young people who are undergoing cardiac

members who are between the ages of 16* and 35 and living with a life-threatening cardiac condition. This area includes an activity area where the members can safely share their thoughts, feelings and experiences. Members can also ask questions of each other. *Parental consent is needed for 16 year olds.

Members’ blogs

There is also the facility in the members’ area for members to create their own blog posts. This is a great way for members to talk about any tests or treatments they have had. Some examples of experiences shared by members include living with a cardiac condition, how they felt when they found out or when they had to give up sports.

Social media investigations may also like to hear from other young people who have undergone similar tests or received the same diagnosis. A number of myheart members have sent in their own videos in which they talk about their condition, and how they felt when they 3

Please follow us on Twitter for all the latest updates: www.twitter.com/myheart_uk And like us on Facebook: www.facebook.com/myheartnetwork

www.myheart.org.uk

myheart Meetings

myheart currently holds meetings twice a year in a central location for young people, between 14 and 35, who have suddenly been diagnosed with a potentially life threatening heart condition. Anybody with a cardiac condition between the ages of 14 and 35 can come to the meetings if they:

Have been offered or already have an ICD Have suffered a cardiac arrest Were diagnosed with an inherited cardiac diease Our members can gain support through meetings and talking to others in a similar situation, hearing the different ways they have coped and discussing any issues that have arisen since their diagnosis. “I went along to a myheart group meeting 6 months or so after being diagnosed with long QT syndrome and having an ICD fitted following a cardiac arrest. I must say I was never planning to join any network as a result of my experience but thought it might be useful to go along once to see what it was like, after all I fitted the criteria and maybe I might be able to take away something useful from it. I was coping OK with my over night change in life circumstances but did have some questions. ”It was incredible and so encouraging to sit in a room with other ‘young’ people with similar experiences and chat normally about stuff. The things that other friends would be over dramatic about or cover me in unwanted sympathy. The nitty gritty, the details, the feelings and hope for what might be possible in the future. Until then, who else had I been able to speak with who actually understood! So I have found myself going back, not www.myheart.org.uk

to every meeting but there are always new people going through similar experiences and I can be there to offer the same welcome and ears that I got, and catch up with the friends I have made from the group. “We all come to the myheart gatherings with different stories, conditions, experiences. What I didn’t appreciate before going along was how beneficial it would be being in a room filled with first hand accounts of a variety of conditions and experiences. This has helped me make better personal decisions than I was able to make following a 15 minute conversation with a consultant. “Condition or no condition, everyone takes an interest in their own well-being, so when something life changing happens it’s only natural that we become interested and maybe research further. As a result we become experts in our own conditions and by sharing experiences and the advice given to us by consultants it has really helped me living with a heart condition. “If you have been referred to as an ‘unusual case’ by a consultant you are not alone!” - Tim Butt, 27 Meetings are free to attend and give members an opportunity to meet and discuss their experiences and personal concerns in an informal but supportive environment. The meetings include a Q&A session with CRY myheart cardiologist, Dr Michael Papadakis who specialises in helping young people diagnosed with one of these complicated conditions. For more information: www.myheart.org.uk/meetings CRY will also cover reasonable travelling expenses on submission of receipts after the event.

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YouTube Channel

At the end of Heart Month 2017, a powerful but pragmatic new YouTube channel was launched by CRY to help support the growing numbers of young people who – thanks to greater awareness and early identification – are learning to live with the shock diagnosis of a potentially fatal heart condition. 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 cardiac conditions in young people. However, as CRY’s unique myheart group know, despite the reassurances from expert doctors, friends and family, such a diagnosis can still have a major impact on their lives.

As well as videos sent in by members to help others – sharing their experiences of being diagnosed or undergoing certain tests and procedures – the new myheart YouTube channel features a number of frequently asked questions which have been sent in by members and answered by myheart cardiologist Dr Michael Papadakis. This is one of our free online open access resources to help those young people who are having to face these new life-changing challenges. There are over 50 videos on the channel including: ● How much exercise can I do with an inherited

cardiac condition? ● What are the advantages of both subcutaneous

ICD and the ICD? ● Can I continue to drive after being diagnosed with

a cardiac condition? ● Are there certain sports you should avoid with an

ICD? ● Am I allowed to get pregnant after being

diagnosed with a cardiac condition? Young people need to know they are not alone and other young people are going through the same experience as themselves – and that’s why immediate access to a wider network of young people is so important. As well as being able to share experiences, another crucial issue is receiving specialist medical information. We want as many young people as possible to have easy access to the expertise and experience provided by our cardiologists, Professor Sanjay Sharma and Dr Michael Papadakis. Experts play a crucial role in developing an understanding of how to cope with the limitations and adjust to a life living with a condition Dr Steven Cox, CRY Chief Executive 5

● I've been diagnosed with an inherited cardiac

condition. Who else in my family needs to be screened? ● If diagnosed with an inherited cardiac condition

how often should you be retested? ● Why would you need to repeat an ablation?

Members are invited to submit questions they would like answered in future videos. Subscribe now for access to first-hand accounts of living with a heart condition and questions answered by the myheart cardiologist. bit.ly/myheartchannel www.myheart.org.uk

Members’ Testimonies

Attended my first myheart meeting in November 2016 and although it was a massive challenge for me due to my anxiety I really enjoyed it and don't feel so alone now I've met other people who are facing the same sort of struggles I am. I now have people to talk about what I'm going through and they won't look at me confused as to what I'm going on about. The myheart website is a good way to connect with people if you have any troubles or questions that need answering - Katie Warrington, 26

When I was diagnosed with WPW, I felt confused and alienated by a condition I did not understand. But when I joined myheart and read the stories of others who had also been diagnosed, and had recovered, the confusion turned to relief and I was comforted by the knowledge that I was not alone, and that moreover there was a support network for me. Fortunately, a simple ablation procedure was able to cure my WPW, and it felt very rewarding to be able to share my recovery with the myheart community. The myheart network offers invaluable support and advice to young people who are faced with the tough and alarming hurdles of heart conditions. - Zenia Selby, 22

If you would like to submit your story to myheart please either submit it via our members’ blog area on the myheart website www.myheart.org.uk or email it to myheart@c-r-y.org.uk with your full name and any photos you wish to include attached.

www.myheart.org.uk

I’ve had a heart condition since the age of 3, I first heard about CRY after my cardiac arrest at 16 but didn’t feel the need to get involved at the time, as I was young and stubborn and hated the idea of ‘seeking help’. I’m now 28 and attended my first meeting after finding out I needed more treatment, and I wish I had got involved sooner! The meeting was so uplifting and supportive, it was so humbling to meet so many other young people going through similar things to you, as it’s so easy to feel like you’re the only one! It was a warm, friendly environment that left me feeling positive and inspired. I’m really glad to be part of the myheart community and I can’t wait for the next one! – Hannah Edwards, 28

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Join the myheart network

Please complete the form below and return it to CRY. Tel: 01737 363222 Web: www.c-r-y.org.uk Email: cry@c-r-y.org.uk Registered Charity Number: 1050845

Unit 1140B The Axis Centre Cleeve Road Leatherhead Surrey KT22 7RD

Name: Date of Birth: Address:

Postcode: Email: Phone Number: Condition: Any other additional notes you wish to add:

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