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PULSE The

Issue 10 - Autumn 2019

Working together to improve the diagnosis, treatment and quality of life for all those affected by arrhythmias

YOU CAN’T SPELL ‘HEART’ WITHOUT ‘ART’ Why a London street artist created this mural for Arrhythmia Alliance

Also in this Issue:

Arrhythmia Alliance World Heart Rhythm Week 2019 Roundup

Meet our Newest Team Members • Fundraising for Arrhythmia Alliance

PLUS MUCH MORE

UK Registered Charity No: 1107496

PULSE The

What’s in this Issue? New to the Team: Meet our newest staff members....................................................... 4-5 Arrhythmia Alliance World Heart Rhythm Week 2019 Roundup.................................... 6-7 You can’t spell ‘Heart’ without ‘ART’............................................................................ 8 Ectopic Beats and Anxiety.............................................................................................

9 AF Association Global AF Aware Week 2019..................................................................... 10 AF Association Healthcare Pioneers Report......................................................................11 Know your Pulse to Know Your Rhythm........................................................................... 12 Fundraising for Arrhythmia Alliance............................................................................ 13 World Heart Day 2019................................................................................................... 14-15 Heart Rhythm Congress 2019......................................................................................... 16-17 Heart Rhythm Congress Awards 2019............................................................................. 18 Patient Story: Helen Helping Others............................................................................... 19 Patient Story: James’ S-ICD Shock.................................................................................. 20-21 Patient Story: Ben’s Donor Discovery.............................................................................. 22-23 Heart Failure, By Vishal Luther....................................................................................... 24-25 Fundraising Champions................................................................................................ 26-27 In the USA: Update from our US Office........................................................................... 28-33 Connect with us........................................................................................................... 34 New Resources............................................................................................................ 35

Want to be featured in our next Issue? Contact Us:

Call: +44 (0) 1789 867501 Email: info@heartrhythmalliance.org Visit: www.heartrhythmalliance.org

USA

Call: (+1) 843-415-1886 Email: info-us@heartrhythmalliance.org Visit: www.heartrhythmalliance.org/aa/us

SAVE THE DATE

18 - 24 November 2019

Atrial fibrillation affects in excess of 16 million people worldwide. This year’s focus is the detection of atrial fibrillation (AF) through our Know Your Pulse campaign, encouraging supporters to know their pulse, to know their rhythm. For more information and ways to show your support, visit: www.gafaw.org

Find out more on Page 10

Visit our Online Shop From heart monitors to t-shirts and collection boxes, you can find lots of things in our online shop all at fair prices. Every purchase helps us to continue providing you with the support you need. www.heartrhythmalliance.org/aa/uk/ shop-online

New to the Team

Meet our newest staff members Beth

UK Programme Coordinator

Hi! My name is Beth, and I joined the team at the beginning of January 2019. I enjoy providing a friendly service and am extremely motivated in supporting my colleagues here at Arrhythmia Alliance. I love exploring; whether that be a new city, country or getting out and about in the countryside with my dog, Betty. I also love to dance, and I have done since a young age. This is something that I’m looking to take up again after moving from Leeds, back to my hometown near the Cotswolds.

Maddy

UK Administration Assistant

Hello! My name is Maddy and I joined the Arrhythmia Alliance team as the Admin Assistant in August 2019. I’m excited to get involved with this wonderful charity and help in any way I can to keep up the amazing things they achieve. Outside of work, I really enjoy travelling and have just returned from 3 ½ months exploring Asia and Oceania. I am also a keen runner and completed the London Marathon in 2018 with the hope to run another next year

Jennifer

US Communications Coordinator

Hi, I’m Jennifer, I was the Creative Marketing Director for T.H.A. Group, a local in-home health care company, for 11 years and have over 14 years of experience in design, marketing and community outreach. I have served as a volunteer for Shelter From the Rain Inc., T.H.A. Group’s Island Hospice, Savannah Church of God, The Living Vine Christian Maternity and several other non-profits. I am the mother of an amazing son, Jalin, who plays the viola and is a senior at Savannah Arts Academy. I am extremely excited to join the team and work towards enhancing the lives of those affected by arrhythmias.

Arrhythmia Alliance World Heart Rhythm Week 2019 ‘Know Your Pulse to Know Your Rhythm’ Arrhythmia Alliance World Heart Rhythm Week (A-A WHRW) is an annual awareness week that focuses on the detection of arrhythmias (irregular heart rhythms), through our heart safe campaigns, by providing education, information and resources on a global scale, and A-A WHRW 2019 did not disappoint! Our focus this year was ‘We Hear(t) You!’, as we wanted people to know that we are here to listen, support, provide information, education and awareness. We want people to listen to their heart. Is it beating too slowly? Too quickly? Is it irregular? That is your heart telling you that something may be wrong. An irregular pulse is sometimes the only symptom of an arrhythmia, some of which can be potentially life-threatening. A simple pulse check is often all it takes to diagnose an irregular heart rhythm.

India, New Zealand, Brazil, Canada, Czech Republic, Portugal and the Philippines, among many other parts of the world! Trudie Lobban MBE, Founder and Trustee of Arrhythmia Alliance was interviewed by a radio station in South Africa during their health show to talk about A-A WHRW, while Sharonica from our USA team was interviewed on a local American news tv programme.

We are very happy to say that our message reached around the globe, with Know Your Pulse and awareness events being held in the UK, Australia, South Africa, USA,

SAVE THE DATE

A-A WHRW 2020 1 - 7 June

The week culminated in an awareness event at the House of Commons, Westminster which was held by Trudie Lobban MBE. The special day saw a gathering of healthcare professionals, trustees, staff, supporters of the charity and patients to celebrate A-A World Heart Rhythm Week, and discuss what still needs to be done to raise awareness and knowledge of arrhythmias.

We have sent emails to everyone asking for your responses, and we would like to thank you all for your support. We hope to have a response soon and will keep you all updated.

Thank you to all who supported Arrhythmia Alliance World Heart Rhythm Week 2019. For more information and to get involved in Arrhythmia Alliance WHRW 2020 Visit: www.heartrhythmalliance.org UK, Call: +44 (0)1789 867501 or Email: info@heartrhythmalliance.org USA, Call: (+1) 843-415-1886 or Email: info-us@heartrhythmalliance.org

You can’t spell ‘Heart’ without ‘ART’ Following the devastating loss of his wife from a sudden cardiac arrest in June 2018, Stewart was passionate about highlighting the importance of knowing your pulse and understanding when there is an irregular rhythm and he has worked tirelessly to highlight this in a number of ways. In May, Stewart organised a remarkable piece of artwork to be painted by graffiti artist, Vincenzo Blow, in Leake Street Arches, London. You can see the size of the piece in the “in action” images! Sadly, due to the nature of Leake Street, the piece was painted over only a week later, but we hope that it was seen by many people during its short life! Vincenzo shared his art on his social media saying “A few weeks ago I bumped into the beautiful soul, Stewart, and after he told me the story of his beloved Chantelle, we decided to arrange a bespoke piece of art in Leake Street Arches to raise awareness of arrhythmia and to let people know about the incredible job that Arrhythmia Alliance does.” Not only did Stewart organise this amazing piece of work, but he raised over £2000 through a Facebook birthday fundraiser and also by walking 114 miles from Leeds Grand Theatre to The Lowry in Manchester by following the canal route! During his 11 day walk, Stewart used his social media account to encourage his friends to know the location of their nearest defibrillator too.

We’d like to say a huge thank you to Stewart for all he’s done for us, and all his friends and family who supported him along the way.

Ectopic Beats and Anxiety An ectopic beat is an additional beat of the heart which can come from either the upper chambers of the heart (the atria) or the lower chambers (the ventricles). They are therefore described as Premature Atrial Contractions (PACs) or Premature Ventricular Contractions (PVCs). Ectopic beats tend to occur when the heart rate is slower, such as when we are relaxing in the evening or sleeping at night. For many people, it is comforting to know that ectopic beats are very common, and in most cases with no other known heart condition they are harmless. They carry no increased stroke risk even in patients with a damaged heart, such as those with heart failure. It is said that most people experience ectopic beats day to day, but many do not feel them. If a person experiencing ectopic beats is otherwise fit and healthy, all that is usually needed is reassurance and advice, such as cutting down on anything that may be acting as a stimulant, for example alcohol or caffeine. Off the shelf cold and flu remedies will sometimes contain decongestants and these together with other drugs that stimulate the heart are probably best avoided.

person with anxiety, experiencing ectopic beats or palpitations can be symptoms that cause more anxiety and worry. These beats can sometimes be a result of anxiety itself, causing significant fear and discomfort. Although the symptoms can be unpleasant, they do not usually indicate any problems with the heart, and the extra beats will not usually cause any damage. Stress can also trigger ectopic beats. The answer to this, is to try and understand that ectopic beats are normal and not dangerous in most cases. If anxiety is still playing a big role in your life after this, a great option for many people is to have Cognitive Behavioural Therapy (CBT). Whilst medications can be taken for anxiety, it is always better to try and get to the root cause.

If you are concerned about ectopic beats, please speak to your GP or consultant.

These ectopic beats however, can have a psychological impact on a person, causing great amounts of anxiety and stress. For a

AF Association Global AF Aware Week 2019

‘Detect, Protect, Correct, Perfect’

SAVE THE DATE 18 - 24 November 2019 AF Association Global AF Aware Week (GAFAW) is an annual awareness week that raises awareness of Atrial Fibrillation (AF), the most common arrhythmia (irregular heart rhythm). Over 1.5 million people have been diagnosed with AF in the UK alone, although experts estimate that at least 500,000 people remain undiagnosed. This number is expected to double by 2050. Every 15 seconds someone suffers an AFrelated stroke, in the UK alone costing the NHS over £2.2 billion each year. However most can be prevented using appropriate anticoagulation therapy.

Help DETECT undiagnosed patients with AF and raise awareness during AF Association Global AF Aware Week 2019!

There are many ways that you can get involved, such as sharing our resources with your local hospital, GP surgeries or community centres, hosting an awareness event, fundraising with a coffee morning or bake sale or by simple making a donation to us to help us raise awareness.

Get involved with AF Association GAFAW 2019:

UK, Email: info@afa.org.uk or Visit: www.gafaw.org USA, Email: info@afa-us.org or Visit: www.gafaw.org/usa

AF Association Healthcare Pioneers

Showcasing Best Practice in AF in 2019 The AF Association Healthcare Pioneers Report recognises best practice in the identification, diagnosis, treatment and care of patients with Atrial Fibrillation (AF) and is used as a benchmark to improve services and care for patients with AF. AF-related stroke is a clear challenge to the future sustainability of healthcare systems and demands high-level attention in every nation in Europe. Due to this, we urge you to bring this vitally important publication to the attention of your local MP/GP and healthcare professional. Order your copy of the Healthcare Pioneers Report to share with your GP and healthcare professionals by contacting us; UK, Email: info@afa.org.uk USA, Email: info@afa-us.org

Visit www.heartrhythmalliance.org/afa/uk/healthcare-pioneers for more information and to see how you can get involved.

TAKE THE PULSE CHECK CHALLENGE KNOW THE RHYTHM OF YOUR HEART – MANUAL OR MOBILE it only takes 30 seconds – yet could save your life!

KNOW YOUR PULSE Is your heart rhythm too fast, too slow, or jumping around (irregular)? It could be an arrhythmia (a heart rhythm disorder) Learn to take your pulse to monitor your heart rhythm

KNOW YOUR ECG Monitor your heart rhythm with a mobile ECG device It records your heart rhythm and conrms if normal, AF suspected or if you should discuss the results with your doctor For more information contact: info@heartrhythmalliance.org

AF A WWW AFA INTERNATIONAL ORG

+44 (0) 1789 867 501 @ info@heartrhythmalliance.org www.knowyourpulse.org

www.heartrhythmalliance.org

WE NEED YOU!

Fundraising for Arrhythmia Alliance

A-A is a registered charity that relies solely on donations, fundraising and successful requests to trusts and grants to continue its work. There are so many ways that you can fundraise for us, from bake sales and bring-and-buys to marathons and skydives. Whatever you decide to do, we will support you all the way. Here are our top five easy ideas for fundraising, but remember, your options are endless! 1. Bake sale: Become your very own star baker, dazzle your friends and family with your baking skills and raise money for A-A at the same time! 2. Bring-and-Buy: Declutter and raise money for charity by hosting a bring-andbuy sale at your school, office or library! 3. Quiz night: Host your very own quiz night and get all participating individuals or groups to make a donation to play!

5. THINK BIG!: For the adrenaline junkies out there, who love to go big and raise money doing it! Any activities or sporting events can be a great way of fundraising, whether it be a marathon, a skydive, a golf tournament or a sponsored walk! How your funds help all those affected by arrhythmias; £10 will help provide personalised support on our helpline and keep us supporting you. £25 will help educate a doctor on how to treat an arrhythmia. £50 will enable us to continue to develop and publish our library of resources. £100 will fund our Know Your Pulse events up and down the country to save the lives of those with an undiagnosed arrhythmia.

4. Come dine with me: Gather a group of your friends and nominate each person to make a course - donate the money you would have spent on going out for a big night out!

To request a fundraising pack (pictured right) or for any additional help in planning your fundraiser, contact us; UK, Email: info@heartrhythmalliance.org or Call: +44 (0)1789 867501 USA, Email: info-us@heartrhythmalliance.org or Call: (+1) 843-415-1886

World Heart Day 2019

Our Heart Promises

Sunday, September 29 was World Heart Day 2019 and our UK and US teams participated in raising awareness of heart health by making our own ‘heart promises’. ‘I promise to know my pulse to know my heart rhythm and to share this message with family and friends.’ - Trudie, Arrhythmia Alliance Founder and CEO ‘I promise to exercise and love my heart so I can be the best mom for my son.’ Jennifer, US Communications Coordinator ‘I promise to strive to be heart healthy and to promote the same in others.’ - Beth, UK Programme Co-ordinator ‘I promise that throughout the year I will keep fit and healthy to keep my heart healthy through sporting activities such as running, squash, football and golf.’ Steve, UK Senior Events Co-ordinator ‘I promise to educate on the importance of AEDs and knowing their location to stay Heart Safe.’ - Clare, US Program and Design Coordinator

Arrhythmia Alliance is dedicated to improving the diagnosis, treatment and quality of life for all those affected by arrhythmias. We, together as a team, promise to continue working towards this mission, by promoting our heart safe campaigns and encouraging all of our patients, partners and followers to love their hearts.

Heart Rhythm Congress 2019 Heart Rhythm Congress (HRC) provides unrivalled opportunity for health care professionals interested in the management of arrhythmias to share effective practice, showcase innovation, learn about latest developments and network with UK and international delegates. An annual week of discussion, debate, diversity, innovation and review, HRC is currently the largest heart rhythm event in the UK. HRC2019 was a fantastic success, thanks to our amazing UK team working tirelessly

to bring it all together and our dedicated healthcare professionals, and faculty, who dedicate their valuable time to speaking during the sessions. Without them this week would not be possible. Arrhythmia Alliance would like to say Thank You to everyone who attended HRC2019, we hope you all enjoyed the week and benefitted from the sessions. For more information and highlights of the week, visit: www.heartrhythmcongress.org

Heart Rhythm Congress brings together experts from around the globe, to present and share their knowledge on the management of arrhythmias.

SAVE THE DATE

Heart Rhythm Congress 2020 27 - 30 September

Heart Rhythm Congress 2019 The Gala Dinner and Awards Annually, during HRC, several Arrhythmia Alliance Excellence in Practice Awards are presented to outstanding individuals and groups, this year’s winners were honoured for their exceptional accomplishments and contributions to arrhythmia services. The Arrhythmia Alliance (A-A) Charles Lobban Volunteer Award for Outstanding Contribution to Arrhythmia Services was presented to Bob Dove, AF Association Volunteer The A-A Award for an Outstanding Individual who has contributed to Arrhythmia Services was presented to Professior Gregory Lip The A-A Team of the Year Award was presented to South West London and St George’s Mental Health Trust The A-A Fundraiser of the Year award was presented to Grace Spencer The A-A Lifetime achievement was presented to Professor John Camm

Arrhythmia Alliance would like to say CONGRATULATIONS to all of this year’s nominees and winners.

Helen Helping Others

Cardiac Physiologist Helen Hodgson runs an Atrial Fibrillation (AF) support group for Arrhythmia Alliance’s sister charity AF Association. This is her story about what encouraged her to set up the support group, and the importance of these group meetings. I have been a cardiac physiologist for many years and my job has always been hugely important to me. It’s fascinating, enjoyable and rewarding and the patient’s experience has always been a priority. In the echo clinic environment, especially, I meet many people, day to day, with the diagnosis of Atrial Fibrillation (AF). It is obvious that patient numbers are increasing. Moreover, many of these patients don’t really know what AF is. They are left feeling confused and alone with no information.

turned up enthusiastically. In fact, we ran out of chairs at that first meeting! That was in June 2018, and since then, we have met regularly to learn about medications, diet and exercise; we have a website and plan more for the future. I am grateful to the AF Association for the encouragement I received to ‘get involved’, not only because I have found it so rewarding but, more importantly, because patients are really benefiting.

I wanted to change this for the people I meet, and so when I learned of the AF Association I began to direct patients to the website, so they could learn more about their condition and dispel some of their fears. They were so grateful of that. This sparked my interest to have a more direct involvement. In 2017, as part of AF Association Global AF Aware Week, I organised a pulse check event. A few work colleagues and myself held the event on a very cold November day in my home town, Frome, and spoke to 85 people who were queuing to talk to us! From this point on I realised that more was needed, and decided the next step was to set up an AF Patient Support Group. With the aid of numerous local sources and the AF Association, a date was set, and patients

Help us to help others - share your story

UK, Call: +44 (0)1789 867502 or Email: info@heartrhythmalliance.org USA, Call: (+1) 843-415-1886 or Email: info-us@heartrhythmalliance.org

My S-ICD Shock - James, UK

The 4th October 2018 was a normal day at work until I started to sweat uncontrollably and experience crushing chest pains. This was to be the start of a long and arduous journey over the next three months.

bounce up and down as she administered CPR.

Following these arrests, I was put in CCU for two days while they stabilised me. I remember waking up with no memory of I was rushed to hospital and immediately how I got there. At the time, I had no real started to undergo checks. I had an ECG and knowledge or sense of how damaging this an x-ray. I was told that I had suffered from had been to myself or my family. a heart attack and required an angiogram to establish how bad it was, and what level Once stabilised, I was told I would need a of treatment I needed. The results came defibrillator implanted. I was given the choice back all clear, my arteries were clear and between an ICD and a S-ICD, but I chose the everything looked good. I was then taken S-ICD because of my age and it seemed a lot for an MRI scan, which highlighted some less invasive. inflammation of my myocardium (heart muscle). I was discharged a few days later After being fitted with this I was discharged with the diagnosis of acute myocarditis. from hospital the very next day. This is when my psychological journey started. I Four days later I suffered the same crushing had gone from a fit, active 31-year-old, to chest pain I had previously experienced. someone who had nearly lost their life on I was rushed back to hospital and all the many occasions, and this was something I tests were repeated. My heart was still struggled to come to terms with. I found a inflamed, and my troponins were showing number of support groups and they helped a a dangerously high level. I was put through great deal, listening to other survivors’ stories more tests and kept in for observation. and their experiences, however I felt that this After two weeks of lying on a hospital bed was not enough as I was still suffering from and feeling fine, I was certain I would be anxiety and small panic attacks. I couldn’t go discharged. This was not to happen, as one five minutes without doing something. I had night whilst lying in my curtained cubicle, to stay busy and keep my mind occupied, I suffered my first cardiac arrest. I have no I was only sleeping four hours a night and recollection of this at all and it was to be gradually getting more and more physically the beginning of many more arrests, six in a tired. five-week period. I only slightly remember two of these episodes. All I can recall is the I was offered Cognitive Behavioural Therapy nurse resuscitating me and feeling myself (CBT) at my local hospital; this took the form

of eight sessions, one per week. They were amazing in dealing with my anxiety. Throughout the sessions we discussed things like my level of anxiety, mood, anger, social skills and how I could manage these problems by changing the way I thought about them.

It is something I cannot change, and I am thankful I am still here now and able to spend time with my family. I’m looking to start back at the gym again very soon, and start exercising with the knowledge that my S-ICD will shock my heart if it detects an abnormal rhythm. It has taken these 12 weeks to completely get used to my It has now been 12 weeks since being device, but now I’m confident I can go on discharged from hospital, and I have and live a normal life with my partner and finally accepted my life changing event. our first baby girl.

Help us to help others - share your story

UK, Call: +44 (0)1789 867501 or Email: info@heartrhythmalliance.org USA, Call: (+1) 843-415-1886 or Email: info-us@heartrhythmalliance.org

Ben’s Donor Discovery - Ben, UK

Since my fourth year of university in 2015, I’ve been a blood donor on the Anthony Nolan register (an organisation focused on finding bone marrow matches for people with blood cancer). Recently, I was contacted by Anthony Nolan because a suitable match had been found for bone marrow donation. After some blood tests to confirm that I was a match, I agreed to be a donor. However, as part of the medical check, I was found to have wolff parkinson white syndrome (an arrhythmia that consists of an accessory electrical pathway). I was therefore referred to a hospital specialising in cardiac surgery for ablation if deemed appropriate.

experienced a great deal of symptoms. I underwent radio frequency ablation, a procedure used to terminate abnormal electrical pathways, via a catheter up the veins from my leg to my heart. It was not possible to reach both pathways this way though, and so another catheter was placed through my right shoulder, resulting in a lung puncture which caused my lung to collapse. All in all, the procedure lasted three hours. During this time, I had to be kept awake as sedation can suppress the faulty electrical pathways, therefore making it difficult for surgeons to locate them. Additionally, the surgeons had to repeatedly set off heart palpitations during this time so that they could identify exactly At first, I wasn’t too worried. Previous where the extra electrical signals were. My health checks for Camp America had heart reached a height of 400 beats per already revealed to me that I had a fast minute. heart, and during visits to my GP I had been told that it was nothing to worry about. If Thankfully, the procedure itself was anything, I was perhaps a little relieved to successful, and the consultant was able to finally have an explanation. The procedure explain to me about the life-threatening was also described as minimally invasive nature of my Wolff Parkinson White and as having low risk. I was confident that Syndrome (WPW). The procedure may have Anthony Nolan were just being cautious been more unpleasant than I expected and and that there was nothing dangerously more traumatising than it usually is, but it wrong with me. was all worth going through as my risk of sudden death from WPW has now been As it turned out, I had a life-threatening abolished. My lung has since completely arrhythmia due to having two accessory healed, and though it was quite a shock pathways and was unknowingly at risk of at the time when it collapsed, it was a sudden death even though I had never small price to pay, all things considered.

The consultant was amazed that I hadn’t experienced any serious symptoms in my past (e.g., palpitations, dizzy spells), and my grandmother thinks it’s because I’m so laid-back and rarely get worked up. I’m a reasonably healthy person and spend a lot of my time going on long hikes, but I’ve never really had to push my heart. It’s hard to determine what the reasons are, but the

amazing thing for me is that I would never have discovered that my life needed saving if I hadn’t volunteered to save a life. It’s an amazing story for me to remember, and will provide a lasting reminder as to how I want to live my life - healthy, never taking anything for granted, and always doing what I can to help those you can.

Help us to help others - share your story

UK, Call: +44 (0)1789 867501 or Email: info@heartrhythmalliance.org USA, Call: (+1) 843-415-1886 or Email: info-us@heartrhythmalliance.org

Heart Failure

The term heart failure is frightening, as it suggests the heart might imminently stop at any minute. This is not the case. Dr Vishal Luther, MBBS, BSc, MRCP, PhD

Cardiology SpR and EHRA specialist in EP and devices. Invited speaker for the AF Association and Arrhythmia Alliance.

Heart failure means the heart is unable to pump as much blood to the body as is ideal. As a result, you might feel more easily tired. The lungs sit just behind the heart – in heart failure, instead of all the blood going out to the body, some might go back towards the lungs and even down to the feet resulting in breathlessness (on exertion or lying flat) and ankle swelling. These symptoms can come on quite quickly (known as acute heart failure), or more commonly can develop over time (known as chronic heart failure). Heart failure symptoms can be very mild (class I) where ordinary physical activity does not cause breathlessness, to severe (class IV) where symptoms can occur at rest.

high blood pressure, heart valve problems, inflammation, prior chemotherapy and excess alcohol. Sometimes the cause of heart failure is not known.

Heart failure might be considered by your doctor following a history and clinical examination, and supported by blood tests to measure a protein called “B-type natriuretic peptide” (BNP) that is raised in heart failure. An electrocardiogram (ECG) might reveal electrical problems with the heart that might be causative (such as an arrhythmia) or a consequence. An echocardiogram (heart ultrasound) is an essential test to visualise the heart chambers and function. Specifically, the echocardiogram looks to Heart failure is very common, and affects assess the left ventricular (main pumping ~2% of the population. It is more common chamber to the body) “ejection fraction” with age. There are many causes – essentially, (EF). This important term, which is used by anything that weakens the heart. This can doctors to determine the severity of heart include a prior heart attack, long-standing failure, means the amount (%) of blood that

is pumped out with each beat. A normal heart pumps out a little more than half the amount of blood it receives (EF: 55-60%). A very weakened heart is defined by doctors as pumping less than 30%. The term EF must be used with care, as it is still possible to get the symptoms of heart failure with a normal EF. The management of heart failure usually involves many healthcare professionals, including your GP, a specialist heart doctor and heart nurse. The first step to helping your heart is helping yourself – losing weight if you are overweight, not smoking, and regular exercise (as tolerated) which may be through a cardiac rehab programme. The main treatment of heart failure symptoms are diuretics (water tablets that make you pass more urine). If the symptoms are acute, this will usually be administered in hospital via a drip. If the symptoms are chronic, this is more likely administered as a tablet at home.

antagonists (MRAs) – your specialist will know which is right for you. Other medicines used for treating heart failure include ivabradine and sacubitril valsartan. In a smaller number of patients with heart failure, the electrical signalling within the pumping chambers can become sluggish – in these patients, special pacemakers (CRT) are implanted to “re-synchronise” and improve the pumping action. In addition, for patients with weakened hearts, defibrillators (ICDs) may be implanted to protect the heart from life threatening rhythm problems which can arise when the heart muscle becomes too weak. In the worst scenario, they can deliver an internal shock to the heart, which whilst painful, is life-saving.

Ultimately the outlook for each patient with heart failure is different and depends on the cause, the severity and the rest of your health. In general, many patients remain stable for quite some time. The condition can progress, and sadly can be fatal. In this There are several important medications that situation, palliative care is helpful. New are proven to benefit you and your heart in treatments continue to be introduced the long-term. These include angiotensin- which have led to an improved perspective converting enzyme (ACE) inhibitors, beta- for people with heart failure. blockers, and mineralocorticoid receptor

Fundraising Champions It is our favourite part of the newsletter as we get to thank our incredible Arrhythmia Alliance fundraisers, and all those who donate their time and money to raise awareness of arrhythmias. A massive thank you to all of you wonderful people for your time, energy and support. We are so grateful to each and every one of you! Thank you to all who have donated to Arrhythmia Alliance so far this year, no matter how large or small, it makes a huge difference!

Neil raised an incredible £2986 to place defibrillators on golf courses, making it a much safer environment. The campaign was backed by Golf Care ambassador and former Ryder Cup captain Bernard Gallacher, whose life was saved by a defibrillator after he suffered a cardiac arrest. Thank you making the course heart safe Neil!

Stewart held a Facebook birthday fundraiser as well as taking on the challenge to walk from Leeds to The Lowry in Manchester in 10 days in loving memory of his late wife Chantelle. Stewart completed the walk while raising awareness along the way, and in total raised a huge £2285.16! Thank you so much Stewart!

Will ran the Bath half marathon on 17th March 2019 with his father to raise valuable funds . This run and the cause was very close to Will’s heart, as he was running in memory of his late Godfather Charlie. Will’s target was to raise £500, but he absolutely smashed that by raising £1343! Thank you so much Will!

Jade celebrated her 30th birthday slightly differently by running the Manchester Marathon on 7th April. Jade trained in the evening, whilst still working full time as a chef. She raised £623, and decided to do this as both her parents have been affected by arrhythmias and heart health problems. Thank you so much Jade!

Finally, thank you to all of our dedicated friends and supporters who donate to us monthly, yearly or make one off donations when you can, and thank you to everybody who donates their time by sharing our resources and raising awareness! Everything you do makes an enormous difference, and we appreciate it so much.

Fundraiser Packs We want to support all our fundraisers as much as possible, so for everyone who takes part in an event to raise money for Arrhythmia Alliance, we will send you a fundraising pack. Each pack will contain sponsor forms, booklets and educational resources, a t-shirt, balloons and a collection box. Call: +44 (0)1789 867501 or Email: info@heartrhythmalliance.org

Arrhythmia Alliance IN THE USA

An update from our US team

Arrhythmia Alliance World Heart Rhythm Week 2019 - Event Overview June 4 - Know Your Pulse Hilton Head Library

June 5 – Know Your Pulse Coligny Beach, Hilton Head Island

Arrhythmia Alliance World Heart Rhythm Week (A-A WHRW) 2019 kicked off with a free “Know Your Pulse” event at Hilton Head Island Library. Participants received free pulse checks, educational resources and complimentary cupcake coupons from Sweet Carolina Cupcakes, located in the Coligny Plaza Shopping Center, it was an honor to partner with them to help increase awareness for A-A WHRW.

The Coligny Beach “Know Your Pulse” event was a huge success with a total of 26 pulse checks and distribution of water, koozies, pens, coupons and educational resources. Each participant was made aware of the importance of A-A World Heart Rhythm Week and spreading the word in regards to arrhythmias. We are extremely grateful to our sponsors including Piggly Wiggly, Sweet Carolina Cupcakes and Rita’s Italian Ice for helping us encourage others to be a part of our #knowyourpulse campaign. It means the world to us that these community partners believe in our mission to enhance the lives of those affected by arrhythmias.

We distributed dozens of educational resources and conducted a total of 17 pulse screenings that helped to raise awareness of the symptoms of irregular heart rhythms. Many thanks to everyone that stopped by our table including Mr. Bojangles the Golden Retriever!

June 6 – Know Your Pulse Hilton Head Hospital The aim of A-A World Heart Rhythm Week is to raise awareness of the symptoms of arrhythmias in both the general public and medical profession. As we extended our reach into the medical population, we were able to educate healthcare professionals and patients at Hilton Head Hospital about arrhythmias and the importance of checking your pulse. We were able to complete 18 pulse checks and distribute 50 resources. Each pulse check participant received a complimentary cupcake coupon from Sweet Carolina Cupcakes.

June 7 – Heart to Heart Game Night We closed out A-A WHRW 2019 with the Hilton Head Island-Bluffton Chamber of Commerce Young Professionals for our “Heart to Heart” Game Night. Our games centered around heart-related trivia facts. Participants were grouped into teams and given a variety of questions that helped to increase their knowledge regarding matters of the heart. We were able to complete over 26 pulse checks, distribute informative resources and educate young professionals about the importance of A-A WHRW. Many thanks to the Hilton Head Island-Bluffton Chamber of Commerce Young Professionals for their partnership in making this night a success!

For the latest news and events from our US team, follow their social media pages: Facebook: @ArrhythmiaAllianceHHI Twitter: @HeartRhythm_US

Arrhythmia Alliance IN THE USA

An update from our US team

It’s been a busy few months for our American team... Heart Month February 2019

29th Annual Art & Science of Health Promotion Conference

‘A Heart Stopping Issue...’ During ‘Heart Month 2019’ our US Executive Manager, Francesca Lobban, was featured in the Pink Magazine about how her family took control and founded the Arrhythmia Alliance.

Our amazing US Community Education Manager, Sharonica Gavin, attended the Art and Science Health Promotion Conference showcasing research on ‘Adapting Know Your Pulse Events to Benefit Young Adults.’

Pink is dedicated to reaching, serving and supporting the women of Hilton Head Island, Bluffton, Beaufort and beyond. The essence of the magazine encourages women to celebrate their womentality! With a respected team of national writers, they provide insightful and thoughtful content, that reinforces their mission of empower, inform, encourage and evoke thought.

For 30 years, the Art & Science of Health Promotion Conference has been presenting the very best in health promotion. Providing practical strategies and research to make health programs for patients more effective.

Community Donations Help to Replace Stolen Life Saving Devices Our US team received an outpouring of community support in response to two AEDs that were stolen over Memorial Day Weekend in Bluffton, South Carolina.

Several concerned citizens reached out and provided funding to replace the lifesaving devices. Despite the unfavorable circumstances, the community response was refreshing and reiterated the Every year in the US alone approximately importance of making AEDs available to all 360,000 people experience out-of-hospital in the event of an emergency. Sudden Cardiac Arrest (SCA) and 90% of those people will sadly die as a result. Due An AED by itself is of no monetary value to the urgent need for publicly accessible and yet a price cannot be put on a life that AEDs, Arrhythmia Alliance and the Bluffton is saved when suffering a sudden cardiac Fire District made it priority to notify the arrest – only an AED can shock the heart public of this incomprehensible theft. back into a normal rhythm.

For more information about the Arrhythmia Alliance - Defibs Save Lives US campaigns or to show your support and make a donation visit: www.defibssavelives.org/USA

Arrhythmia Alliance IN THE USA

An update from our US team continued April Highlight, National Volunteer Month Michael, Public Health Senior Internship, USCB

Volunteers offer so much to non-profits by dedicating their invaluable time, skills and experience to community projects. It is important as a non-profit to also consider what is offered to volunteers and how they are rewarded for their contribution. At Arrhythmia Alliance we offer a range of unique benefits, for our volunteers, that allow us to thank them for their time and recognize their service to our life-saving work.

This is why they volunteer…

I volunteer because I want to make a difference. When I first started with Arrhythmia Alliance (A-A) I wasn’t sure that I was going to be able to make a noticeable contribution to our patients and the community but, five months later, I feel like I’ve done so much more than I could have ever imagined. Not only is A-A an incredible organization, doing important work, but it provides volunteers with opportunities to grow and flourish in this field. Everything I have experienced here at A-A will be beneficial to me in all walks of life. I have lived in the low country for 12 years in August and I have connected with the community more in my tenure here at A-A than ever before.

Tricia, Board Member & Volunteer

I attended Sophia University in Tokyo for Asian Studies and received a B.A. in Sociology from North Central College in Illinois. I also have a Master’s degree in Organizational Development from National Louis University in Illinois. I volunteer for Arrhythmia Alliance because education really can and does save lives. We can do so much for so many, so quickly, with a new but powerful alliance.

David, Patient Advocate & Volunteer

David is an atrial fibrillation patient, AFrelated stroke survivor and one of our dedicated volunteers. In 2017, David suffered a significant AFrelated stroke with aphasia. Since then he has worked tirelessly to share his story and help others on their road to recovery. David attributes his success to the advice of Abraham Lincoln, “If it is going to be, it is up to me.”

Sarah, Public Health, Junior Internship, USCB Arrhythmia Alliance has taught me the importance of just how critical it is to take care of your heart. I volunteer because I enjoy helping others and sharing with my friends and family what Arrhythmia Alliance stands for. I have met so many people and built strong relations with this non-profit organization. This is such a rewarding experience that I will never forget.

Connect with us Social Media You can always connect with us and other patients through various forms of social media. For instant updates and extra information, follow us: @ArrhythmiaAlliance @ArrhythmiaAllianceHHI UK Facebook: USA Facebook: Twitter: @KnowYourPulse Twitter: @HeartRhythm_US You can also connect with us on HealthUnlocked: www.healthunlocked.com/heartrhythmcharity

Support Groups For more information about arrhythmia and AF support groups in your local area, please look on our website: www.heartrhythmalliance.org UK, Call: +44 (0)1789 867501 USA, Call: +1 (843) 415 1886 To find out about setting up a support group in your area: UK, Email: Charlene c.payne@heartrhythmalliance.org USA, Email: Sharonica s.gavin@heartrhythmalliance.org

Dates for your Diary AF Association Global AF Aware Week, 18 - 24 November 2019 Arrhythmia Alliance World Heart Rhythm Week, 1 - 7 June 2020 Heart Rhythm Congress, 27 - 30 September 2020

New Resources We have worked together with patients to create two brilliant new resources; - Mindfulness and Healthy Living with an Arrhythmia - Living with Heart Failure These resources will help you to better understand and manage your condition and to adapt to a new lifestyle. To download these resources visit: www.heartrhythmalliance.org or to request a copy Call: +44 (0)1789 867501 Email: r.harris@heartrhythmalliance.org

AWARE WEEK

GLOBAL AF SHOWAWARE YOUR WEEK SUPPORT

AND RAISE AWARENESS OF ATRIAL FIBRILLATION

18 - 24 YOUR NOVEMBER 2019 SHOW SUPPORT AND RAISE AWARENESS OF ATRIAL FIBRILLATION

18 - 24 NOVEMBER 2019 DONATE Help Save Lives

DONATE SUPPORT

Help aSave Lives Host Know Your Pulse event

SUPPORT SHARE

Host a Know Your Pulse event Patient Resources

There are so many ways you can get involved and support GAFAW 2019 Help us to raise awareness all around the world by;

FOR MORE INFORMATION ABOUT GETTING INVOLVED

Patient Resources Sharing and displaying our information • Making a donation

CALL: 07189 867 502 @atrialfibrillation Fundraising • HoldingEMAIL: a ‘Know Your Pulse’ event • Connecting on social media info@afa.org.uk @AtrialFibUK VISIT: www.gafaw.org @arrhythmiaalliance

FORto MORE INFORMATION GETTING Contact us today make a donationABOUT and show yourINVOLVED support

CALL: 07189Charity 867or502 UK, Visit: www.gafaw.org Call: +44 (0)1789 867502 UK Registered No: 1122442 © @atrialfibrillation 2019 AF Association USA, Visit:EMAIL: www.gafaw.org/usa or Call: +1 (843) 415 1886 info@afa.org.uk @AtrialFibUK VISIT: www.gafaw.org

@arrhythmiaalliance