STARS Spring Newsletter 2018 by www.heartrhythmalliance.org

Take

to Heart Issue No: 46

Spring 2018

25th Anniversary (1993 – 2018) Working together with individuals, families and medical professionals to offer support and information on syncope and reflex anoxic seizures

2018 is a special year for STARS, celebrating our

25 th Anniversary

of providing information, education, awareness and support for RAS, Syncope and PoTS

TAKE FAINTI NG TO HE A RT SWALLOW SYNCOPE XXX www.stars-international.org © STARS 2018

UK Registered Charity No: 1084898

The First 25 Years Trudie Lobban, MBE

STARS was born through terror, confusion and frustration. Imagine your son or daughter playing happily one minute and unconscious the next for no apparent reason. Your GP reassures you it is something that can happen and reiterates this two weeks later when it happens again. Worse, imagine your child losing consciousness eight times in a day and still being ‘patted on the head’ and told not to worry by the clinicians, including one who witnessed an episode. I know many of our members will relate to this.

Through determination and trust in a gut feeling that it is NOT normal for a child to faint, you begin a quest to find out what really is causing your child to lose consciousness whenever there is an unexpected pain, shock or even a surprise. Countless letters to experts, numerous appointments and brain scans fill your weeks, but no explanation is found. That was my life for more than three years before an arduous search lead to a diagnosis. During that time, my daughter never left my sight for fear of injury during an attack. Through all this, the episodes began to resemble fits, with her arms and legs jerking

Go online: www.stars.org.uk • info@stars.org.uk

3 after she lost consciousness. In the absence of reassurance otherwise, we feared some form of epilepsy or perhaps a brain tumour. In desperation, we dispatched hundreds of letters to paediatric neurologists around the world but despite seeing consultants from leading hospitals, we were left not knowing what could be wrong. Little did we know that hundreds, if not thousands, of others were enduring the same experience; appointment after appointment, test after test, only to be told nothing.

“STARS was deluged with enquiries from thousands of parents and individuals who were experiencing, or had experienced, exactly the same battle for information, answers and resolution.” This is my story of 25 years ago. Eventually, my daughter was diagnosed with reflex anoxic seizures (RAS). I was told there was no treatment. However, the paediatric consultant neurologist who made the diagnosis asked if I would consider speaking to other families in a similar situation. This began as an earnest eﬀort to ensure that a niche group of parents would not have to endure the same fruitless and distressing search for answers. It rapidly became something diﬀerent. Following a brief appearance on a national breakfast TV show, the embryonic STARS was deluged with enquiries from thousands of parents and individuals who were experiencing, or had experienced, Helpline:

exactly the same battle for information, answers and resolution.

“STARS has always had a Medical Advisory Committee which was the first of its kind in the world; playing a vital part in the success of STARS and earned us enormous respect.” STARS is now active in more than 30 countries around the world, addressing the common and unique challenges that prevent equitable and eﬀective patient access to education, diagnosis and management. None of this progress would have been possible without the contribution of patients and clinicians to patient initiatives. STARS has always had a Medical Advisory Committee (STARS MAC) which was the first of its kind in the world; a multidisciplinary group of clinicians from cardiologists to neurologists, paediatricians to geriatricians (today we provide support for syncope in all ages) and even a psychiatrist. This layer of medical direction, insight and credibility has played a vital part in the success of STARS and earned us enormous respect. In the same way, an informed and confident patient voice has improved patient access to care via paths not readily accessible to clinicians and other professional groups. Trudie Lobban MBE is Founder and CEO of Syncope Trust And Reflex Anoxic Seizures (STARS), a global patient advocacy organization supporting patients who suﬀer from unexplained transient loss of consciousness. Trudie was awarded Member of British Empire due to her work for STARS.

A Lot Can Make Me Faint! Hello! My name is Isabelle and I have RAS and PoTS. I am 11 years old and sometimes I can have RAS attacks. A lot of diﬀerent things can cause me to pass out. Here are some: • Something scary • If I run for a long time • Blood (This can be mine or someone else’s) • If I get too hot As you can see a lot can make me faint. I mainly have a seizure when things get my heart rate going. Luckily, I am always surrounded by people who can help me. My doctor told me that if you drink plenty of water and eat lots of salt you can hopefully avoid a seizure. I have been told that I need to drink about 3 litres a day. Unfortunately, I have never been able to drink that much but I have come close. The best advice I can give is to drink plenty of water and if you pass out like I do drink some Lucozade Sport when you are going to exercise.

“I have had lots of ECGs, I have also had two echoes and a tilt test.” I have had to have a lot of diﬀerent tests these last couple of years. I have had lots of ECGs. An ECG is where they put stickers that are attached to wires on you and then a reading of your heart beat gets printed out.

This shows them what my heart is doing. I have also had two echoes. An echo is where they scan your heart with a rolling stick and some gel. It feels a bit like having some roll-on sun cream put on. Then a picture of your heart will appear on the screen in front of you and the doctor. I have also had a tilt test. A tilt test is where they strap you onto a table and then see what your heart will do when you have a seizure. Unfortunately, it did not go too well as they had to stop it because I was getting very stressed. So, I am going to try again when I turn 12.

Go online: www.stars.org.uk • info@stars.org.uk

5 I have not passed out for 10 months but I do come close to it quite often. When I am going to pass out I must make sure I do the right thing, or I may have a seizure. Here are the things I must do to make sure I do not have a seizure: •

•

Lay down in a quiet place and make sure I don’t walk around

•

If I am with friends I keep one with me and the other gets help

Overall, I have found that even if you feel extremely ill you will always get better. I really hope that my story had helped you to understand PoTS and RAS. Isabelle Hampshire

Drink as much water as possible

Patients Day 2017

Once again, we were oversubscribed for our popular STARS Patients Day! Our members arrived early to ensure front row seating and to enjoy browsing the stands and chatting to other patients and carers. Presentations by leading international specialists were praised for being patient-friendly but at the same time providing the latest thinking and treatment available for a particular condition. Patient comments speak loudest “Meeting others with PoTS” “animated speakers who are easy to listen to” “an opportunity to ask questions of medical experts” “reassurance! reassurance!” Turn to page 9 for news of the new format for Patients Day 2018 Helpline:

Extended Continuous Ambulatory Monitoring (A Longer-term Wearable Heart Monitor)

Currently, continuous ECG monitoring with a Holter monitor can record cardiac electrical activity for between 24 and 48 hours. However, if a patient is experiencing only one or two episodes a week, it is a lottery whether one of these monitors would be suitable. There is also the implantable loop recorder (ILR) which is a small thin device that is fitted under the skin (as a day patient) to monitor heart rhythms if episodes are less frequent than every 30 days. These loop recorders can remain for up to three years. What is the new extended continuous ambulatory monitoring? Often arrhythmias (irregular heart rhythms) may occur occasionally, therefore, they may not be detected during a routine 12-lead ECG. A longer, continuous ECG may be required to capture the arrhythmia to enable your doctor to diagnose or confirm there is no irregularity. This much-needed long-term wearable heart monitor allows a doctor to track and analyse your heart rhythm during normal activity. The monitor comes in the form of a small adhesive patch that you can wear on the upper left side of your body for up to two weeks, during which time the device will record and store data from your heartbeat and rhythm. You can also highlight the points at which you experience symptoms by pressing a button on the patch to enable your doctor to see any correlations with your heart rhythm. At the end of the prescribed period you can remove the patch, post it back in the box provided and a detailed report will be generated and sent to your doctor to identify

whether you have an arrhythmia and to determine a diagnosis and appropriate treatment if needed. Who is it designed for? It would be beneficial for an individual whose symptoms are infrequent so the 24/48 hour monitor would not be appropriate. However, a monitor that spans up to two weeks is more likely to detect an episode. The device is unobtrusive and will provide all the necessary information with minimal disruption. How is it fitted? The patch is a one-time use monitor that can be applied by your GP/nurse. The skin is cleansed so the patch will stick eﬀectively and remain in place for the prescribed period. Any symptom can be recorded by pressing a button on the patch and noting it in a booklet. Will it aﬀect my day to day activities? This new form of monitor is designed for extended wear and to cause as little upset to an individual as possible. With no wires, you will be able to continue normal activities, including showering and exercise. You will only need to press a button to mark symptoms and mailing the patch upon completion.

Go online: www.stars.org.uk • info@stars.org.uk

7 Vasovagal Syncope and the Misdiagnosis of Epilepsy Many patients are inappropriately labelled as having epilepsy. UK research has shown that approximately 30% of adults and up to 40% of children diagnosed with epilepsy in the UK do not have the condition.

tests including EEG, CAT and MRI scans, there is often no evidence of a true seizure disorder. However, there are many instances when the inappropriate diagnosis has been made prior to the tilt table test and anti-epilepsy medication prescribed. Some patients then lose their driving licence based on this incorrect conclusion. Does this sound familiar? If you have been given a diagnosis of epilepsy, despite a negative EEG (s), you should insist on being tested for vasovagal syncope. A 12 lead ECG, tilt table test and an implantable cardiac monitor (ICM) may indicate the true diagnosis and lead to the correct treatment.

Being labelled as having epilepsy can dramatically alter your life because of the stigma associated with this and the side eﬀects of anti-convulsant drugs. Doctors have long suspected that many patients who are given this diagnosis do not have epilepsy at all – they have vasovagal or neurocardiogenic syncope. Vasovagal syncope occurs due to a brain reflex (often triggered by pain, fright, dehydration, low blood sugar or many other things) causing the blood vessels in the legs to dilate. Blood suddenly pools in the legs, the volume of the blood returning to the heart is reduced, blood pressure falls and the victim then loses consciousness. Many patients with vasovagal syncope can react in a seizure-like fashion when they lose consciousness during a tilt table test. When some of these patients then undergo further Helpline:

If YOU are currently diagnosed with epilepsy and on anti-epilepsy medication but feel you may be one of those who have been misdiagnosed, then do not hesitate to email info@stars.org.uk. STARS booklet, Reflex Syncope (Vasovagal syncope) can be downloaded from the STARS website, www.stars.org.uk. A paper copy can be requested by emailing info@stars.org.uk Misdiagnosis is common but avoidable • Many syncopal attacks are mistaken for epilepsy • However, epilepsy only affects slightly less than 1% of the population • Many elements of a syncopal attack, such as random jerking of limbs, are similar to those experienced during an epileptic seizure. • It can be difficult to differentiate the causes of the blackout.

STARS

Celebrates its 25th Anniversary with Arrhythmia Alliance World Heart Rhythm Week 4-10 June 2018

Fainting or syncope is relatively common but for some it is a sign of an arrhythmia (heart rhythm disorder) and should never be ignored. Arrhythmias can aﬀect people of all ages and for some fainting may be the first indication of a problem. 50% of the population will faint at least once in their lifetime. In recognition of STARS 25th Anniversary, the focus for this year’s Arrhythmia Alliance World Heart Rhythm week will be ‘Take fainting to heart’.

On Wednesday 6th June 2018, STARS will be joining Arrhythmia Alliance to spread the word with stakeholders from around the UK at the House of Commons in Westminster. Guests will include medical professionals and members of parliament, and there is a limited number of places for STARS members. If you would like attend, then please register your interest at http://www. heartrhythmalliance.org/aa/uk/heartrhythm-week Should you feel able to help us spread awareness of arrhythmias this World Heart Rhythm Week, then this link will also provide ways to get involved.

Go online: www.stars.org.uk • info@stars.org.uk

STARS Patients Day 2018 Sunday 7 October, Birmingham ICC

We have listened to you, our members, and the many medical professionals who support us! As a result, STARS patients day 2018 will have a new format! This year we will be hosting two meetings: •

PoTS and related topics

•

Syncope for all ages (embracing syncope in the young (RAS) and in the elderly (SaFE))

They will both run throughout the day but delegates will be able to attend presentations of both meetings if a specific topic is of interest. Full agendas will appear in our monthly e-bulletins during the coming months. However, if you are interested in attending these specialised meetings, we strongly advise registering your interest as soon as possible. Email info@stars.org.uk or call 01789 867503 to secure a place.

New Style STARS Wristbands for 2018! We have just taken delivery of these wristbands which we are selling for £2 each. We love them, our children love them and our friends love them! They are not just for those who are struggling with RAS, syncope or PoTS but for anyone and everyone who want to support STARS. Why not order today by visiting the shop at www.stars.org.uk

Helpline:

Fundraising Champions Diane 22 year old son James had RAS as a child. With STARS’ support they were able to understand and manage his condition. He is now due to complete his astrophysics degree this year! Diane has been making “heart shaped aprons” and selling them to friends and family. She has kindly made donations to STARS for each apron sold. We think they’re beautiful!

Zoe did a 24 hour readathon in July and raised over £700 for STARS! Zoe suﬀers with SVT and PoTS but wanted to do something. As she has quite a following on her blogs www.nosaferplace.co.uk she was confident she’d be able to raise lots of money. Thank you, Zoe!

Our front cover star is 5 year old Philip who decided to take part in a “scootathalon” to raise money for STARS after his baby sister was diagnosed with RAS. He scooted 400metres, then rode his bike 400metres, finishing oﬀ with a 150metre run! Some feat for a 5 year old! Philip has raised a brilliant £233 for STARS! Thanks so much Philip!

Go online: www.stars.org.uk • info@stars.org.uk

Jane has been holding a book swap at her local Co-Operative store in Forres and raised over £200 so far, despite having one of her money boxes stolen just before Christmas! Perhaps your local supermarket would welcome similar initiatives.

Fundraising Pack Saskia who has PoTS and vasovagal syncope ran the British 10K back in 2013 and is now running the Virgin Money London Marathon on 22nd April. If you would like to support Saskia, you can do so by visiting https://uk.virginmoneygiving.com /SaskiaHaining Saskia says, “I will run my little heart out (not literally and definitely with a heart rate monitor checking I’m doing ok!) for everyone who donates!” Helpline:

Whether you are organising a bake sale, a trek, run, or skydive, don’t forget to let us know! We will provide as much support as we can, including this fundraising pack containing a selection of our resources, balloons, t-shirt and money box.

Jeff’s Marathon Adventure

Jeﬀ ran the Virgin Money London Marathon 2017 for STARS. Jeﬀ completed the course in just 3 hours and 27 minutes and, with only a few aches and pains, was out on another run less than a week later.

more money towards Jeﬀ ’s total. In total the family have raised a marvellous £2,535. Thank you to the whole family!

Jeff ’s daughter Evie suffers with RAS, so the charity is very close to his heart. Please read Evie’s story for more details Jeff ’s parents, Barbara and Percy, along with other family members have held a variety of events leading up to the marathon, including a disco night, afternoon tea and a collection day in their local supermarket to raise even Go online: www.stars.org.uk • info@stars.org.uk

Evie – happy, adventurous and carefree

Evie is a very happy two-and-ahalf-year old, full of character and determination. She is the youngest of three and great fun to be around. I clearly remember Evie’s first seizure. My husband Jeﬀ and I had just run the Cambridge half marathon with my sisters. Evie was six months old and at the end of a tiring day she lost her balance sitting on the floor and hit her head. She let out the most distinctive cry and I knew instantly that something was very wrong. She was stiﬀ, her limbs were arched outwards and rigid. Her eyes rolled into the top of her head and she was deathly white. Helpline:

She wasn’t breathing and I couldn’t feel her heart beat.

“She was stiﬀ, her limbs were arched outwards and rigid. Her eyes rolled into the top of her head and she was deathly white. She wasn’t breathing and I couldn’t feel her heart beat.” We needed help and with two older children aged five and three to consider, I flew across the road with Evie to a neighbour’s house while my husband dialled 999. As I reached

14 our friends, Evie appeared to come to a little, but she was semi-conscious and a frightening grey colour. Jeﬀ arrived with the girls at the same time as the paramedics. Evie was groggy and not really with it as we took her into hospital. The paramedics were fantastic in helping to reassure Tilly and Florence who didn’t want to see their baby sister taken away.

“We were discharged with a diagnosis of breath holding. It didn’t really seem fitting with what had happened before.” We were discharged with a diagnosis of breath holding. It didn’t really seem fitting with what had happened before. I had experienced breath holding with one of Evie’s sisters when they were younger and I knew that what we had experienced was something quite diﬀerent but at that stage did not know about, let alone understand, RAS. In the weeks and months that followed, Evie had a cluster of seizures. More often than not they were initiated by blows to the back of the head. Not happy with what was happening and what I already knew as a mum, I pushed for a referral from the GP. We saw a paediatrician who again diagnosed breath holding. Four months after her first seizure there were seven of us around the tea table including two of Evie’s older cousins. It was a happy tea time with lots of banter and jokes. All of a sudden a big roar of laughter took Evie by complete surprise and triggered another attack. This was the worst to date. Again she appeared to stop breathing and for a moment

I couldn’t feel a heart-beat. She was taking longer to recover so oﬀ we went to A & E. We were seen by an experienced A&E doctor, who actively listened to everything I had to say without question. After months of suppressed anxiety, I was overcome. This doctor knew about RAS. It transpired that Evie had an underlying infection which had made that seizure worse and harder to recover from. However, with a family history of cardiomyopathy (for which I am tested regularly) we pushed for an ECG to rule out any underlying heart condition and an EEG to help eliminate epilepsy. Months went by without an episode. I returned to work and Evie started at nursery. Then, five months later, Evie had another RAS attack when she bumped her head. We handled this episode on our own at home with no hospital trips which was an important milestone. I took a week’s unpaid leave and did more research and came across STARS.

“We were seen by an experienced A&E doctor, who actively listened to everything I had to say without question. After months of suppressed anxiety, I was overcome. This doctor knew about RAS.” The charity was fantastic in giving me the confidence that everything we were doing was right. The level of knowledge and understanding was second to none. Many worries were addressed by the RAS booklet.

Go online: www.stars.org.uk • info@stars.org.uk

15 We learned of the correlations with night terrors, sensitive hearing, pains in the legs as well as familial tendencies. This immediately contextualised the interrupted nights with Evie’s inconsolable nightmares and the pins and needles that her older sister suﬀers also.

“STARS was fantastic in giving me the confidence that everything we were doing was right. The level of knowledge and understanding was second to none. Many worries were addressed by the RAS booklet.” I used the STARS resources (Jack has RAS) to explain to Tilly and Florence who appeared to comprehend. This was confirmed a week later when Evie experienced an episode before her sisters’ swimming lesson – triggered by the change of atmosphere from the extreme February cold to a heated humid poolside. They remained calm, gave their sister a gentle kiss then hopped into the water for their lesson – reassured they were not to blame. I was so proud of their response that day and it is thanks to STARS. Evie continues to grow and develop with all the usual parenting challenges and delights. We grow with her and learn all the time how to eﬀectively manage her and her RAS. Evie undoubtedly has a particularly sensitive head and I make no apologies for her birds nest hair; it is the one thing I let go. (hair brushing can trigger an RAS attack in children or adults with a particular sensitivity). Helpline:

We are fortunate in that Evie has not experienced RAS attacks with as high a frequency as some children, but they are still extremely upsetting.

“Parenting Evie requires an extra level of vigilance and mental resilience which is tiring and at times overwhelming.” She is happy, adventurous and carefree so the biggest day to day impact is for my husband and me! Parenting Evie requires an extra level of vigilance and mental resilience which is tiring and at times overwhelming. Leaving her in the care of others is not quite as carefree an activity as it should be and naturally our time oﬀ has suﬀered as a result. This is something that we will rebalance as we continue to learn and grow with her. Emily Cambridgeshire To help us to continue supporting people like Evie and her family, please consider donating or fundraising for STARS!

Heart Devices – Saving Lives and Preventing Infection Over two million people are alive today because of cardiac implantable electronic devices (CIEDs), also referred to as heart devices. These include pacemakers, implantable cardioverter defibrillators (ICD) and cardiac resynchronisation therapy (CRT). These devices are specifically designed to help keep your heart functioning normally. A pacemaker is a small device that is placed in the chest to help control abnormal heart rhythms (arrhythmias). It uses a battery and electronic circuits connected to the heart by one or more wires (leads) to prompt the heart to beat at a normal rate. These leads are passed along a blood vessel to your heart and the pacemaker box is usually implanted under the skin in your upper chest. The pacemaker can monitor your heart and produce electrical impulses to treat abnormal heart rhythms.

function of the heart so that you potentially feel less breathless and have more energy. There is between a 1% and 7% chance that the device will become infected at the time of surgery. Preventative measures are taken to safeguard against infection, but extra precaution is advised for heart device surgery as this procedure carries a higher infection risk.

An ICD is a device that monitors the heart rhythm continuously. If the heart starts to beat dangerously fast the ICD is able to detect this and treat it, potentially saving the person’s life. There are two types of ICDs being implanted today; transvenous ICD systems (through the veins and into the heart) and the subcutaneous S-ICD, which does not touch the heart but sits just under the skin.

What are the consequences of a surgical site infection?

Cardiac Resynchronisation Therapy (CRT) devices are used to help treat heart failure, and can be either a permanent pacemaker, or an ICD. They work by making the lower heart chambers (ventricles) pump at the same time (synchronously) and improve the overall

How is a heart device surgical site infection treated?

Surgical site infections can be diﬃcult to control. Readmittance to hospital to treat the infection with possible additional surgery to replace the device may be necessary. In severe cases, surgical site infection can be life-threatening.

A heart device surgical site infection is usually treated by removing and replacing

Go online: www.stars.org.uk • info@stars.org.uk

17 the device. A new device cannot be implanted until the infection is treated and eliminated. This means after the device is removed, the patient will be given antibiotics for up to six weeks.

New innovative technology – The antibacterial envelope An antibacterial envelope has recently been introduced to hospitals that can help prevent these potentially serious surgical site infections. Clinical studies have shown that patients at high risk of heart device infection who have been implanted with an antibacterial envelope develop 70% - 100% fewer infections than similar patients who are not given this protection.

The envelope is an antibacterial mesh sleeve that holds the device when implanted in the chest. It eﬀectively stabilises the device and reduces the chance for movement or skin erosion. It is the only antibacterial device for heart device implants that is fully absorbable. This is important to surgeons if or when a heart device may need to be replaced. What are the benefits of the envelope over current antibiotic protection? There are specific types of bacteria responsible for over 70% of heart device infections, many of which are becoming resistant to commonly used antibiotics. Clinical studies have demonstrated that patients who are given the additional protection of an antibacterial envelope have significantly fewer heart device infections.

Do you know the rhythm of your heart? Everyone needs to know their pulse rhythm - it could save your life!

Know your pulse It only takes 30 seconds. Is your heart rhythm too fast, too slow or jumping around?

Know your ECG Monitor your heart rhythm with a mobile ECG device which records your heart rhythm and confirms if normal. An AliveCor Kardia mobile ECG device can be purchased for just £99 through STARS by calling 01789 867503 and a percentage of the sale will be donated to us. Helpline:

It Was YEARS Before Anyone Believed Me

My name is Talya, I am 17 years old and chronically ill. I have diagnoses of PoTS, EDS (and hyper-mobility) and gut dysmotility, all of which aﬀect me daily and hugely impact my life. I was a healthy and active child, enjoying many activities. However, from the age of seven I began experiencing frequent stomach aches and bouts of nausea, in addition to joint pain.

I complained about the sickness to teachers and my parents, who put it down to stress. It was years before I was believed and referred to a specialist who diagnosed Ehlers Danlos Syndrome, which had been causing my pain and sickness. It was a great relief to know this was not all in my head and people would finally start believing me!

“At the age of 12, I struggled with blacking out randomly with palpitations and hot flushes. A family friend suggested PoTS.”

Go online: www.stars.org.uk • info@stars.org.uk

19 At the age of 12, I struggled with new baffling symptoms, blacking out randomly with distressing palpitations and hot flushes. Eventually a family friend who was a doctor suggested PoTS. Following a tilt table test, I was diagnosed with PoTS. I was 14. I struggled to find doctors to listen and offer practical advice, and still do today. I have trialled different drugs, some of which left me extremely depressed, with worse nausea. Today I still suffer on a daily basis; the list of symptoms goes on and on (blackouts, nausea, migraines, fatigue, dizziness); I’m on more medication than a 17 year old should be taking and it can take me weeks and weeks to recover from a cold.

“I’m on more medication than a 17 year old should be taking and it can take me weeks and weeks to recover from a cold.” I have given up sport and accepted lifestyle changes – I am no longer able to stand up in the shower and often find myself having to lie down in very public areas (most recently the middle of the supermarket!) just to feel normal again! I could be learning to drive, but have had to skip that milestone due to PoTS. My gap year plans fell through since the institute at which I was hoping to study said I would be asked to leave if my illnesses aﬀected my studies. Luckily one good (and very furry) thing came out of it – a puppy! As an animal lover, I always wanted a dog and, hopefully, Coby Helpline:

the Goldendoodle will become more than just a pet. I hope to sign him up for medical detection classes, and be registered as my service dog. Time will tell, but right now he is a very positive influence on my life.

“I have found that talking to others in similar situations really makes me feel good.” I have multiple coping mechanisms, including yoga, changing my diet (gluten and lactose free helps relieve stomach swelling), and taking naps throughout the day. The pain still affects me, and it is difficult to always remain positive. I do try, however, and have found that talking to others in similar situations really makes me feel good. My school years have ended, but were greatly affected by my illnesses. I could spend days at home, unable to commute due to joint dislocations or feeling ill and, unfortunately, my teachers were not particularly understanding. They would refuse to send work home and be angry when I missed lessons. This only added to my frustrations, and I knew that I had not reached my potential. Fortunately, I am going to university next year to study veterinary nursing but, in the meantime, I am hoping that new treatments will become available and provide a little more relief. I end my story with a saying that I am particularly fond of which could apply to anyone out there battling chronic illness like myself. ‘’I will make you happy’ said life. ‘but first I will make you strong’’. Talya, Essex

Good News for Families in Northern Ireland Affected by Inherited Heart Conditions

A new genetic testing service has opened at Belfast City Hospital, aimed at identifying and supporting those at risk of inherited heart conditions. When someone dies from an inherited heart condition, it is possible that their son, daughter or a close family member could be aﬀected with such a condition. It is, therefore, essential that they are referred to a specialist testing centre. This is the first clinic in the UK to benefit from a fund set up in memory of the late David Frost. One such condition is Long QT Syndrome This is a rare condition which is often never diagnosed. It is a syndrome which can cause a disturbance in the electrical system of the

heart, whilst the mechanical function of the heart can remain completely normal. Typically, the first signs of Long QT may appear in early teens but there have been instances of symptoms showing in new-born babies and those of middle-age. Important symptoms that should not be ignored include fainting following exercise, upon waking with an alarm, or a sudden fright, and cardiac arrest when the person appeared fit and healthy with no symptoms. Always remember that no faint is a simple faint and a 12-lead electrocardiogram (ECG) is essential for all patients with blackouts because, very rarely, Long QT syndrome may show up.

Go online: www.stars.org.uk • info@stars.org.uk

21 National Institute for Health and Care Excellence (NICE)

Access to medications prior to NICE guidance

Obtaining medications following NICE approval

The Medicines and Healthcare Products Regulatory Authority (MHRA) is the body that decides whether to license a medication or treatment.

If you think you have been denied a drug or treatment approved by NICE, your first port of call should be back to your doctor. They will ensure that the particular therapy is appropriate for your condition.

When a drug has been licensed, your doctor can prescribe it for you so long as your local NHS agrees to pay for it. Once NICE has issued guidance on medication, treatment or procedure to core people (NHS chief executives and local government organisations) this must be followed.

The NICE website (www.nice.org.uk) includes patient versions of its guidance which outline clearly for whom a new treatment is intended. It is important to remember that NICE guidance does not replace the knowledge and skills of individual health professionals who treat patients; it is still up to them to make decisions about a particular patient.

STARS fact sheet providing information about the role of NICE and its role in supporting access to therapies can be downloaded from www.stars.org.uk

Frequently Asked Questions

Working together with individuals, families and medical professionals to oơer support and information on syncope and reƪex anoxic seizures

www.stars.org.uk Registered Charity No. 1084898 Registered Charity No. 1084898

STARS now has printed copies of the FAQ booklet, which was previously only available online. If you care for a newly diagnosed child with RAS, this is invaluable in addressing some of your concerns. For a copy, email info@stars.org.uk Helpline:

STARS new resources ®

Identifying the Undiagnosed Person

Which ECG is Right for You?

How mobile devices can make a difference

Working together with individuals, families and medical professionals to oơer support and information on syncope and reƪex anoxic seizures

www.stars.org.uk

Registered Charity No. 1084898

Patient & Healthcare Resources Leaflets, posters and promotional materials also available . To order please contact info@heartrhythmalliance.org or download from www.heartrhythmalliance.org

Booklets Cognitive Behavioural Therapy for chronic health conditions Diagnostic tests for syncope Education information Frequently asked questions Identifying the undiagnosed person Living with low blood pressure Postural tachycardia syndrome Psychogenic blackouts Reflex anoxic seizures (RAS) Reflex syncope SAFE (syncope and falls in the elderly) Which ECG is right for you? Paediatric information Jack has RAS Jane’s ILR Bertie’s pacemaker How my heart works Factsheets Bradycardia Cognitive behavioural therapy (CBT) Syncope in older people: Common causes and advice Diagnostic tests for syncope

Implantable loop recorder (ILR) Information for Anaesthetists, Dentists etc Inappropriate sinus tachycardia (IST) Long QT syndrome Midodrine Miniature insertable cardiac monitor (ICM) system NICE Pacemaker Postural tachycardia syndrome (PoTS) Reflex anoxic seizures (RAS) Reflex syncope (Vasovagal syncope) Syncope and falls in care homes: An introduction Syncope and diet: You are what you eat Syncope and diet: For teens Syncope causes falls in older people Syncope during pregnancy Syncope in care home residents Tilt table test Checklists Blackouts checklist

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

£5 £10 £25 Post:

will provide booklets for newly diagnosed individuals will help provide personalised support via our helpline will enable us to continue to develop our library of resources You can send a cheque payable to STARS to Unit 6B Essex House, Cromwell Business Park, Chipping Norton, OX7 5SR

Phone: To make a one-oﬀ donation over the phone, please call us on 01789 867503

Payroll: Give as you earn, tax-free, straight from your Payroll. Email to find out more info@stars.org.uk

Online: To donate online, please visit our JustGiving page: https://www.justgiving.com/STARS

The Importance of Gift Aid If you are a UK tax payer, declaring Gift Aid allows us to reclaim 25% of your donation from HMRC at no extra cost to you. We can claim Gift Aid on all donations, but sadly we cannot claim it on any purchases you make through us.

GIFT AID

FORM

What can I do? You need to make a Gift Aid declaration for us to claim. You can do this by completing the form below. You can include all donations from the last four years as long as you were a tax payer. Visit https://www.gov.uk/donating-to-charity/gift-aid for more information.

Name:......................................................................................................................................... Address:....................................................................................................................................... ............................................................................................................. Postcode:.......................

*I want to Gift Aid my donation of £___________ and any donation I make in future or have made in the past 4 years to STARS

*I am a UK taxpayer and understand that if I pay less Income Tax and/or Capital Gains Tax than the amount of Gift Aid claimed on all my donations in that tax year it is my responsibility to pay any diﬀerence. Please notify us if you want to cancel this declaration, change your name or home address or no longer pay suﬃcient tax on your income and/or capital gains. Your address is needed to identify you as a current taxpayer. Helpline:

Stay In Touch We like to keep in touch about the vital work we do for those aﬀected by atrial fibrillation. Data Protection regulations are changing and from 25 May 2018, we cannot contact you unless you give us consent. We NEVER share or sell your details with anyone else – we treat all communication as confidential. We want to continue to provide information, education, resources and support so please contact us by calling 01789 867503 or email info@stars.org.uk to let us know you still want to hear from us you are important to us.

Social Media You can also connect with us and other patients through various forms of social media. For instant updates and extra information, follow us on Facebook (facebook.com/stars), Health Unlocked (healthunlocked.com/stars) and Twitter! @BlackoutsTrust

Support Groups For more information about arrhythmia support groups in your local area, please look on our website www.stars.org.uk or call us on 01789 867503.

Go online: www.stars.org.uk • info@stars.org.uk