STARS Autumn Newsletter 2019 by www.heartrhythmalliance.org

TAKE

to HEART Issue 48 - Autumn 2019

Working together with individuals, families and medical professionals to offer support and information on syncope and reflex anoxic seizures.

FUNDRAISING SUPER-STAR

Read about how one young woman’s journey with RAS raised over £32,000 and earned her ‘Fundraiser of the Year’ 2019

Also in this Issue:

STARS at Westminster • PoTS Frequently Asked Questions

Night Terrors in Children • ‘Dear Jenni’ Answers Your Questions

PLUS MUCH MORE

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HEART

What’s in this Issue? STARS at Westminster................................................................................................. 4-5 PoTS Frequently Asked Questions...............................................................................

6-7 Patient Feature: Lauren’s Life Changing VVS ................................................................... 8-9 In the USA: Update from our US Office........................................................................... 10-15 Fundraising Champions................................................................................................ 16-17 Patient Feature: Niamh’s Fainting Journey........................................................................ 18-19 Compression Stockings for PoTS and Syncope................................................................. 20-21 Patient Feature: Fundraising Super-Star Grace’s RAS Journey........................................ 22-23 Night Terrors in Young Children.................................................................................. 24 ‘Jack has BIG NEWS’.................................................................................................... 25 New to the Team: Meet our newest staff members........................................................... 26-27 Dear Jenni.................................................................................................................. 28-29 Connect with us........................................................................................................... 30 New Resources............................................................................................................ 31

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

Call: +44 (0) 1789 867503 Email: info@stars.org.uk Visit: www.stars.org.uk

USA

Call: +1 843 415 1886 Email: info@stars-us.org Visit: www.stars-us.org

Do you have a question about living with syncope, PoTS or RAS? Turn to page 28 where our dedicated patient services coordinator, Jenni, provides answers to common issues relating to syncope, PoTS and RAS.

Send your questions to: STARS – Dear Jenni, Unit 6B, Essex House, Cromwell Business Park, Chipping Norton, OX7 5SR or email r.harris@heartrhythmalliance.org with the subject line “Dear Jenni”

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/stars/uk/ shop-online

STARS at Westminster for Arrhythmia Alliance World Heart Rhythm Week 2019 Our sister charity, Arrhythmia Alliance, celebrated Arrhythmia Alliance World Heart Rhythm Week (A-A WHRW) by hosting a reception in the Terrace Pavilion in the Houses of Parliament on Wednesday 5 June. There were presentations from leading specialists talking about heart rhythm disorders, syncope and related conditions. This year’s event attracted people young and old, politicians, heart rhythm specialists, members of industry, and even a furry, four-legged friend!

Trudie was delighted to welcome Douglas Ross, MP for Moray, who came along to the event. He said:

“I’ve been working with Jane, an outstanding local campaigner from Forres, Scotland, to raise awareness of what STARS and Arrhythmia Alliance do to support people who suffer seizures and I’m delighted to support A-A WHRW from the 3rd to 9th June.”

SAVE THE DATE

A-A WHRW 2020 1 - 7 June

Talya brought her newly qualified assistance I enjoyed my experience so much I dog, Coby. Talya says: made a booklet about it to show my

“I had a great time learning about the recent pharmaceutical advancements in the field of arrhythmias and hearing about new technologies that can help diagnose people. Coby loved showing off his skills to a large crowd - this was the first big event he has attended with me and everyone was so welcoming.”

class.

Some famous people have survived when their heart stopped because there was an AED to hand. There was a little girl who sadly didn’t survive because her heart stopped in her school playground and there was no AED to hand. An AED gives an electric shock which shocks your heart back in to life.

When I got back to school I asked my teacher about whether our school had an AED and I discovered that we had one right outside our classroom.

I thought this was good but there should be one at the end of the road too, so that people on the park nearby could get to it.”

10-year-old Eva came along with her Mum, Anita. Eva said: “I had a wonderful time at the Palace of Westminster. It was so interesting to hear all about STARS. There were little tables all around the room with leaflets about the progress in the work that people have been doing to save lives. I particularly liked learning about a device which goes in a pocket of skin near your heart and helps it beat normally. There was a very kind lady in the room that let me feel it, as she had one.

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

PoTS Frequently Asked Questions We have published a new resource, PoTS Frequently Asked Questions, here is a small selection from the new booklet.

Q A

in carbohydrate and higher in fibre content. Different patients find different diets to be helpful - there are no hard and fast rules and you may need to experiment.

What is the difference between Postural Tachycardia Syndrome (PoTS) and dysautonomia?

Dysautonomia is an umbrella term used to describe several different medical conditions that are due to a malfunction of the Autonomic Nervous System (ANS). These can include a fast resting heart rate, orthostatic hypotension, irregularities with the body thermostat amongst other things. PoTS is one form of dysautonomia with major symptoms that arise when an individual is standing and are relieved by lying down.

Q A

Can diet affect PoTS? Blood pressure and pulse rate can be influenced by what we consume. These changes can be quite dramatic in a PoTS patient. Some symptoms can be improved through smaller and more frequent meals, as many patients with PoTS experience deterioration in their symptoms after meals. It is preferable to eat ‘low GI food’. This means that the food is digested more slowly and does not therefore produce rapid peaks in blood sugar levels. These foods are often lower

Q A

What medication and treatment options are currently available for PoTS?

Medications such as salt tablets, fludrocortisone and midodrine can be prescribed to help control the unpleasant symptoms. Some consultants may also consider ivabradine or beta blockers. Patients can respond differently to different medications – sometimes this can be a matter of trial and error. Thigh-high medical compression stockings or exercise compression leggings are sometimes suggested to help prevent blood pooling in your legs by pushing the blood upwards. For more information turn to page 20

Does exercise help PoTS? One symptom of PoTS is exercise intolerance. Patients tend to feel exhausted or unwell during or after limited activity. There is evidence, however, that if exercise is undertaken

Q A

in the correct manner, a patient’s symptoms and quality of life can improve. The most beneficial is regular exercise, engaging in daily, mild-moderate aerobic activities in a more supine (lying face upwards) position (recumbent cycling, rowing, swimming for instance). Exercise will not only improve fitness and increase energy, but retrains the Autonomic Nervous System (ANS) to regulate blood flow correctly and also increases heart size and blood volume, which are thought to be problems in PoTS. Why do I feel worse in the morning? Kidneys eliminate excess fluid in the body when you are lying flat for some time, which is normally at night. Whilst sleeping under a duvet or blanket, we continue to sweat, and these two factors contribute to relative dehydration first thing in the morning. This is the reason why people with PoTS can feel worse in the morning. A glass of water taken before getting up can help.

Q A

Can dehydration cause PoTS? Dehydration needs to be avoided, as it will worsen symptoms of PoTS. Fluid intake should be increased in PoTS patients as they often have low blood volume and additional fluid will help boost this. If resting blood pressures are on the low or low-normal side, then increasing salt intake (6 to 10g: 1-2 teaspoons) may also be helpful. Do beta blockers help PoTS? Beta blockers can be helpful for patients with hyperadrenergic PoTS but they can increase symptoms of hypotension; often patients find that small doses can be helpful but larger doses may make things worse again.

Is PoTS classed as a disability? PoTS affects individuals in different ways. Some people may be able to cope with regular schooling or working, but others may suffer significantly from their symptoms which affects their ability to hold down a normal job and pay their bills. If this is so, they may qualify for disability benefits.

For more information, you can download our new resource “PoTS Frequently Asked Questions” from the STARS website or call us on 01789 867 503 to request a copy.

Lauren’s Life Changing VVS - Lauren, London

My name is Lauren, I am 27 years old, and I am a wheelchair user as I suffer from vasovagal syncope. As well as this, I am also currently being tested for PoTS and non-epileptic fits. To say having this condition broke my heart and was a huge pill to swallow would be an understatement.

My whole life changed overnight, and I had no control over it. I was as fit and happy as could be, and I was also very young, so why now?

they didn’t believe me, my GP said I was probably working too hard and my body was tired. It wasn’t until I was pushed to stand outside my doctor’s office and I passed out, that they started to take notice and all the tests began. Blood tests, diabetes test, MRI, ECG, EEG but nothing was found. My parents were getting sick of how I was being treated so my dad paid for me to see a private consultant. He explained to me what vasovagal syncope was and told me he would write to my GP and tell him what tests I needed to save us money. He prescribed me salt tablets which I take twice daily. I was given my own wheelchair from the NHS which made life easier, but I hated leaving my house; anxiety would kick in and the fear of people asking me questions and seeing the shock on the face of the people I knew made me depressed.

I went from having everything, to being misunderstood and judged because nobody else understood my condition. I think the most confusing thing I found with having VVS is the fact that one minute I can feel “normal” and the next I can be bed bound. It was terrifying not knowing Three years ago, I was referred to a when the next episode was going to be, it’s counsellor who was amazing and my like living a horror movie on repeat. I was outlook on life changed. I pay her privately having daily episodes. now. Yes, I have down days, but my days are mostly positive. My confidence has The first time I passed out was really out grown, and I bought a mobility scooter to of the blue. I was 22 years old. When I go out with my friends for lunch. To have first went to my GP about my episodes, that independence back means the world

and now I understand how to control my triggers. I can go out alone. It feels great. One evening I uploaded a picture to a fashion competition on Facebook and to my surprise I won. Not only did I win, but a management team approached me and wanted to work with me and help me become not only a plus size fashion influencer but an influencer for disabled people. It was all on my terms so there was no pressure. I listened to my body and when I needed to rest or take a few days to myself I would. My advice to anyone suffering with these conditions, diagnosed or not; be persistent in getting the treatment you need and deserve. Remember you don’t have to be alone. There are groups on social media for people like us. Share your feelings and don’t keep it to yourself, but also don’t let your condition rule your life, and, most importantly listen to your body.

Help us to help others - share your story

UK, Call: +44 (0)1789 867503 or Email: info@stars.org.uk USA, Call: +1 (843) 415 1886 or Email: info@stars-us.org

STARS 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: @syncopetrustUS Twitter: @SyncopeTrust_US

STARS 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 STARS 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 STARS 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 STARS an incredible organization, doing important work, but it provides us volunteers with opportunities to grow and flourish in this field. Everything I have experienced here at STARS 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 STARS 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 STARS 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 a dedicated volunteers for our sister charity, AF Association. 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

Sarah, Public Health, Junior Internship, USCB STARS 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 STARS 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.

STARS IN THE USA

How PoTS turned my life upside down - Suzanne, California

Imagine that you have horrible dizziness and imbalance for no apparent reason… your body has no control over its cooling system, so you are constantly overheating, and you have such severe anxiety you wonder how you are going to make it through the day. Well this is what happened to me four years ago. I had my life turned completely upside down by a rare disease called PoTS (Postural Orthostatic Tachycardia Syndrome). At 56 years old, I spend the majority of my life working morning, noon and night; however, four years ago, that all came to a screeching halt. I remember waking up in the middle of the night and having such severe dizziness that I couldn’t get my bearings. Over the next couple of months, I had an onset of strange symptoms, like a pounding heart rate when I stood up. I was exhausted all the time. I couldn’t even climb a set of stairs without being out of breath. I had horrible stomach problems and was so severely dehydrated from my body overheating, I was drinking almost a case of water a day and carrying around a face fan and a bag of ice because I was always burning up.

I went to countless doctors who had a hard time determining the cause of my symptoms. I became so incapacitated that I left my Los Angeles residence and moved back to South Jersey where my family resided. I spent my summer bed-ridden and used the time to research the illness and at times I began to feel hopeless about my condition.

at such a young age. It broke my heart reading stories that mothers had posted about their teenage kids who struggled to live with it. I had to say to myself, ‘Okay Suzanne, you are never going to be like who you were before. You won’t be you. You’ll just be a different version of you,’ and that was the mindset that I had to keep. Slowly but surely, I forced myself to get out of bed. If I passed out, I passed out, One day, my heart rate became so high, I I would try it again the next day. I would was rushed to the emergency room. I was force myself to eat, whether I could keep it referred to a local semi-retired cardiologist down or not. I would drink literally a case who had a small practice and during my of water a day. Little by little, I managed to consultation he looked at me and said, get back up on my feet. Every day, I took a “You have PoTS.” baby step and refused to give up. It was the first time that I had ever heard the term. I finally began to feel some kind of relief — at least this illness had a name. My solution-orientated character said to myself: “No worries. I’ll just get into the infamous Mayo Clinic and I’m sure that there will be some sort of treatment that they could offer.” To my surprise, the wait to schedule an intake appointment would take over a year and a half.

I credit my mindset and determination as a key factor in healing. Yes, there are days that are a struggle but, in general, I’m pretty much back to living a normal life and you know what? It’s okay. Be strong. Accept how you are, where you are, and find the courage to keep moving forward.

You will have better days ahead, you just have to believe.

Surprised to find that 85-90% of PoTS. patients are female, mainly teenagers, I was horrified. I can’t imagine having this

Help us to help others - share your story

UK, Call: +44 (0)1789 867503 or Email: info@stars.org.uk USA, Call: +1 (843) 415 1886 or Email: info@stars-us.org

Fundraising Champions Anne ran the Reading Half Marathon in March raising almost £200 for STARS. Nicole from Northamptonshire raised £131 during a bake sale at her son’s school. Alsters Kelley Solicitors in Leamington Spa held a dress down day during Arrhythmia Alliance World Heart Rhythm Week and raised £90.10 for STARS.

Sarah from Lincolnshire, and her family are doing a variety of activities throughout the year to raise funds for STARS and other charities close to their hearts. Here’s a photo of the family when they walked and cycled around Rutland Water in May.

Jane from Scotland has continued her book swap in her local Co-op store. Her fundraising total so far is £3428 with £1644 being raised in 2019 alone! Thank you, Jane, for all your hard work – keep it up!

FUNDRAISING SUPER- STAR Grace has been fundraising all year, along with her family and school. So far, together, they have raised over £32,000 for

STARS!!!

You can read all about what they have been doing – and are still doing - on page 22.

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 STARS, 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 867503 or Email: info@stars.org.uk

Niamh’s Fainting Journey

PoTS will never stand in my way! - Niamh, Sheffield

In real life no one faints for no reason. You watch people pass out all the time in films and, somehow, they just get up and carry on with their lives! This is far from reality, which I came to learn at the age of 15. It was my GCSE year, 2015-2016, I was attending a group physiotherapy session for strength in the hope to improve my hypermobility. When I stood up from a lying down position, the world would go black. In the following weeks I experienced pre-syncope, sickness and headaches. With my GCSEs around the corner I went to see my GP who responded, “lots of young women pass out” and blamed it on anxiety. After a few more visits to my GP and no symptoms improving, around November 2016 they ran some tests: bloods, an ECG and blood pressure. Nothing remarkable showed as they were not monitored over a long period of time but nonetheless this one GP decided to refer me to my local hospital.

I finally got an appointment with my local cardiologist in the summer of 2017 who did a 24-hour ECG which showed tachycardia in accordance to me reporting I was dizzy and an echo scan as well as a sitting and standing blood pressure. Due to little understanding and much confusion she decided to refer me to a specialist. I saw the specialist in November 2017 where I underwent a tilt table test, I can conclude that it was probably one of the worst experiences of my life, nevertheless it gave me the diagnosis of PoTS or Postural orthostatic Tachycardia Syndrome. Little did I know this was only the start. When you are first diagnosed it can be overwhelming, but you do just learn to adjust, and I believe PoTS will never stand in my way. The worst my PoTS has ever been was during the summer of 2018 when I was sitting my A levels, Fainting and then vomiting during my English exam has got to be the highlight, clearly my body didn’t fancy analysing Great Expectations!

Despite that I finished my A levels and got into my first-choice university. I am now at the end of my first year of university and I have had to learn how to adjust to university life with PoTS. I am probably the best I have ever been. I am even going to America this summer to teach tennis to children which, when I was diagnosed, I never thought I would be able to do! PoTS can definitely be tough and when flares hit, you feel like every ounce of energy has been sucked out of you but equally it can be so rewarding to overcome and achieve things you never thought you would when you were first diagnosed. So maybe what I said at the start of this is kind of true, maybe...I have learnt to faint

and just get back up and carry on with my life.

Help us to help others - share your story

UK, Call: +44 (0)1789 867503 or Email: info@stars.org.uk USA, Call: +1 (843) 415 1886 or Email: info@stars-us.org

Compression Stockings for PoTS and Syncope Compression stockings can help prevent or minimize some of the unpleasant symptoms of PoTS and syncope such as light-headedness, fainting, low blood pressure, a racing heart, ‘brain fog’ and muscle pain caused by blood pooling in the legs. These stockings are specially designed to apply pressure to the lower legs, which will encourage an increased blood flow back to the heart. Pooling of blood in the ankles can be a major problem in PoTS. Wearing correctly fitted compression hosiery during the day will help to prevent this and this is particularly important if your normal daily activities involve standing or even sitting for long periods of time. Compression hosiery can be quite hard to put on but many manufacturers will provide advice when purchasing these garments and are likely to have devices to assist with this. Advice from both patients and doctors is to put these on before getting out of bed in the morning as this is the time when there can be serious pooling in the ankles.

Compression stockings have improved over the years and the high microfiber content of the newer designs ensures these tights are particularly soft and gentle on the skin and there is a wide range of colours to choose from. For some individuals struggling with PoTS, compression stockings can make a world of difference to everyday life. It is worth a try.

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THE ATTRACTIVE COMPRESSION STOCKING VENOTRAIN.CO.UK

LOOK GOOD AND FEEL GREAT 20 VENOTRAIN.CO.UK

My Road to Recovery from RAS

- Grace, East Sussex

I first fainted on 8th March 2017 when I was 14 years old. Within just a few weeks, I was fainting multiple times a day. My GP was at a complete loss and my parents were desperate. Over the next four months we travelled up to London from our home in Ticehurst, East Sussex to see various specialists - cardiologists, neurologists, radiologists, endocrinologists and more yet none of them could fix me. I underwent so many tests. Six months after my first collapse, we found a consultant paediatrician who knew exactly what was wrong with me. He told me I was suffering from Reflex Anoxic Seizures (RAS) and the reason I was collapsing to the floor was because my blood pressure was falling to an unsustainable level - suddenly and mostly without warning. He prescribed the drug midodrine to help raise my blood pressure, and it impacted me almost immediately. My fainting drastically decreased from 8 times a day down to 4-6 times a month. After what felt like an eternity, I began to feel normal again. I was warned that there may come a time where my body became used to the medication. Initially, I was taking one tablet

a day but over time, I have had to gradually increase the dosage. I am now taking five tablets a day. I have also been suffering with terrible headaches and constant dizziness – side effects of the midodrine. To counteract this, I have been having regular saline infusions at the hospital. Although my condition isn’t life threatening, it is life-changing. I was extremely sporty before; I was in various school teams: swimming, netball, hockey, athletics, etc. and I rode my horse in various events. I haven’t been able to compete properly since my diagnosis. Collapsing in the water and whilst on horseback is extremely scary and dangerous!

Little things that most teenage girls and boys do on a daily basis without thinking twice, I haven’t been able to do because of my condition. I can’t go anywhere by myself; I’m not allowed to catch a train on my own in case I faint off the platform and it’s doubtful I will be able to learn to drive when I turn 17.

It was agreed that I could take all my GCSE exams at home, with an external invigilator. This made me feel much happier and less stressed. The decision had such an impact on my general well-being. Apart from the collapse during the Hastings Half Marathon, the last time I fainted was on 20th January 2019 during my mock GCSE exams… fingers crossed this means Even though it has been a difficult two I am truly getting better. I’m really looking years, my school has been amazing. Not forward to having the PICC line taken out, only have I been allowed to stay at school and to enjoying the summer. to complete my GCSEs, but I’ve also been allowed to dye my hair red to raise awareness for my condition. I set up a JustGiving Page, delivered an assembly to the whole school and organised a non school uniform day and netball tournament to raise money for STARS. The PE department was so moved by my story that they chose to support STARS when they ran the Hastings Half Marathon in March. I also completed the Half Marathon, along with my dad and uncle, despite fainting two miles into the race! It was such a fantastic day! To date, I have raised over £3,000 for STARS. My grandparents have made a separate donation of £1,000. It doesn’t stop there! My uncle David challenged himself to a hike over 100km from London to Brighton on foot at the end of May, raising more than £3,800, and my dad is walking from Land’s End to John O’Groats in the Autumn. His page has raised over £16,500 so far!

Grace was honoured by our sister charity and awarded the Arrhythmia Alliance Fundraiser of the Year award during Heart Rhythm Congress 2019. For more information visit www.heartrhythmcongress.org

Help us to help others - share your story

UK, Call: +44 (0)1789 867503 or Email: info@stars.org.uk USA, Call: +1 (843) 415 1886 or Email: info@stars-us.org

Night Terrors in Young Children

•

Stay calm. These terrors are more frightening for you than for your child.

•

Night terror symptoms are frequent and can involve recurrent episodes of intense crying, screaming and distress during sleep, even if the eyes are wide open.

Only attempt to restrain your child physically to prevent self-injury.

•

Your child will not remember the incident in the morning and no mention should be made as this could cause distress.

•

Protect your child against injury. During a night terror he or she can fall down the stairs, break a window or run into the wall. Place anything harmful out of the way and lock doors and windows if necessary.

•

If possible, comfort and hold your child close until the episode passes, and they can return to normal sleep.

•

DO NOT attempt to shake or shout at your child to wake them up as this will cause them to become more upset and disturbed.

Your child will not see you or know that you are there. These episodes tend to occur in the first half of the night and it is very difficult to arouse a child from a night terror. It is acknowledged that young children with RAS tend to have these night terrors just prior, during or immediately after a batch of attacks.

What can parents do?

Some children who suffer with RAS can also experience periods of night terrors, growing out of them by the time they are four or five years old. Although alarming, night terrors are not normally a cause for concern and do not cause any long-term psychological harm to a child.

Jack has BIG News We are thrilled to announce that our paediatric resource, ‘Jack has RAS’ - which helps children better understand Reflex Anoxic Seizures (RAS), including symptoms, diagnosis and treatment, recently received the BMA Patient Information ‘Highly Commended’ Award.

To download a copy, visit: www.stars.org.uk or call: 01789 867 503 to request a printed copy

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 varied administration service and am extremely motivated in supporting my colleagues here at STARS. 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 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.

Dear Jenni... Our Patient Services Coordinator, Jenni, answers your questions about living with syncope, PoTS and RAS.

Q A

Whenever my young child has an RAS attack, my husband immediately scoops him up, placing him upright over his shoulder. This concerns me because I think he should be put in the recovery position and then carried horizontally to lie down on a sofa or bed. Which way is the safest? In the first instance, you should ensure your child is lying in the recovery position in a safe environment, having checked he has nothing in his mouth to choke on and his airways are clear. When he begins to regain consciousness then you are correct that he should be carried horizontally to a quiet place so he can sleep. It is important that a child remains in the recovery position initially to encourage blood flow to the brain as the heart restarts.

Q A

I fainted for the first time in my 64 years last week. I feel fine, but my friend who was with me insists I see a doctor. Do you think this is necessary? Yes, you should make an appointment to see your GP. Fainting, also known as syncope, is caused by a temporary reduction in the flow of blood and oxygen to the brain. Some causes are relatively benign, such as dehydration or having blood tests. However, there are also some potentially more serious causes, some even life-threatening, including heart conditions, especially in adults over 60. My doctor said I should drink plenty of water to help avoid fainting. How much is enough? It is recommended that you drink at least 2 litres (around 4 pints) of water per day. This can be in the form of diluted squash but should not include caffeinated drinks as these are diuretics.

Do you have a question to ask Jenni?

Send your questions to STARS – Dear Jenni, Unit 6B, Essex House, Cromwell Business Park, Chipping Norton, OX7 5SR or email r.harris@heartrhythmalliance.org with the subject line “Dear Jenni” We cannot guarantee an answer to all enquiries to the ‘Dear Jenni’ Page, if your question is urgent, please seek medical advice ASAP.

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:

UK Twitter: @BlackoutsTrust

Facebook: @blackoutstrust

USA Twitter: @SyncopeTrust_US

Facebook: @syncopetrustUS

You can also connect with us on HealthUnlocked: www.healthunlocked.com/stars

Support Groups For more information about syncope, PoTS and RAS support groups in your local area, please look on our website: www.stars-international.org UK, Call: +44 (0)1789 867503 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 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; - PoTS Frequently Asked Questions - Mindfulness and Healthy Living with Syncope 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.stars.org.uk or to request a copy Call: +44 (0)1789 867503 Email: r.harris@heartrhythmalliance.org

STARS relies on donations to enable us to maintain our helpline, resources and support services to patients and carers.

Please support us, so that we can continue to support you!

£5 or $5

will help a patient to learn more about their condition/s

£10 or $10 £25 or $25 will help provide personalised support via our helpline and websites

will enable us to continue to develop our library of educational resources

WAYS TO DONATE ONLINE: UK, Visit: www.stars.org.uk - USA, Visit: www.stars-us.org and click the DONATE button POST: send your donation to:

UK, STARS, Unit 6B, Essex House, Cromwell Business Park, Chipping Norton, OX7 5SR USA, P.O. BOX, 5507, Hilton Head Island, South Carolina, 29938

PHONE: make a one off donation over the phone, UK, Call: 01789 867 503 - USA, Call: 843-415-1886 For more ways to donate, including Paypal and Gift Aid, visit www.heartrhythmalliance.org/stars/uk/donate