STARS Issue 37, August 2012

Issue No: 37 August 2012

Take

to Heart

Providing information and support on Syncope, RAS and POTS

Our Olympic STARS STARS members given their ‘Moment to Shine’ Sixteen-year-old honoured with part in the Olympics

Torch-carrying teen cares for mother Fifteen-year-old Lucy Fellows suffers from postural tachycardia syndrome (POTS) among several problems that result from a genetic disorder called Ehlers-Danlos syndrome (EDS).

Lucy’s mother, Louise, also has EDS and POTS and has been a member of STARS for some time. Louise nominated her daughter to carry the Olympic torch to recognise Lucy’s role as one of her mother’s carers; cleaning and cooking while coping herself with the havoc that POTS can bring to a young life. As well as caring for her mother, Lucy is currently studying for her exams while also contributing to her community as member of the Girl Guides and Rangers and a local wildlife group.

On 24 May, despite the disabling symptoms of POTS, Lucy managed a short jog as she proudly carried the Olympic torch that is perforated with 8,000 circles; one for every person who has carried it!

Join us at STARS Patients’ Day

Harminder Samrai experienced her first RAS attack when she was two-and-half years old. Her mother visited eight doctors to find a diagnosis which, 14 years ago was largely unrecognised.

At the age of 12, the RAS attacks grew worse and so Harminder was fitted with an implantable loop recorder (ILR) to record her heart. Two days before her fourteenth birthday, the ILR recorded a 23 second pause in her heart and a pacemaker was fitted.

Undaunted by the pacemaker and the grief following the sudden death of her father on Christmas Eve 2008, Harminder picked up the gauntlet and decided to participate in sporting events at school and joined the CCF Army Cadet Training Corps, including the camps!

Some people may think having a serious heart condition and a pacemaker is the end of leading an active life - not for this 16-year-old who has gone from strength to strength, proving she won’t let anything hold her back!

“Meet, learn, ask questions and share“

23 September 2012 The ICC, Birmingham

See back cover for details Registered Charity No: 1084898

Your Heart in Your Hands touches the world Congratulations to all the individuals, teams and organisations that took part in this year’s Heart Rhythm Week. You were part of the biggest Heart Rhythm Week ever with hundreds of individuals registering to take part and thousands of events taking place across the world.

Heart Rhythm Week was also broadcast through radio.

In London, Daybreak Health Editor, Dr Hilary Jones and patient member

‘There are so many things that doctors can do now’

G HOW I … LIVED FOR HEALTH & WELLBEIN STOPPING CONDITION YEARS WITH A HEARTmoisturiser and I fel izure (RAS) is brought

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In the community In local communities across the UK, from Teesside to Bournemouth, doctors, nurses, patients and carers volunteered their time to raise awareness of the signs and symptoms of heart rhythm disorders in hospitals, supermarkets, GP surgeries, schools and libraries.

Notable events included: Jersey The General Hospital’s cardiac team offered free pulse and blood pressure checks to Islanders. The team saw a staggering 635 members of the public in just eight hours, detecting nine patients for further tests and directing two patients to A&E with chest pain.

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Joanne Brookes, conducted 14 radio interviews raising awareness of the signs and symptoms of heart rhythm disorders for Heart Rhythm Week.

Heart Rhythm Week observed across the world Heart Rhythm Week reached far beyond the borders of the UK with awareness events in China, India, New Zealand, Australia, USA and South Africa.

Arrhythmia Alliance China organised free health consultations and educational lectures involving doctors from 32 urban and rural hospitals across Beijing reaching more than 7,000 patients and 350 doctors.

In Chennai, India, The Madras Medical Mission kicked-off Heart Rhythm Week with a walkathon on Marina beach, followed by an arrhythmia screening camp in Mogappair targeting students and teachers.

Manchester The Heart Centre cardiac team held an awareness event offering free pulse checks in their local Asda.

Through opportunistic pulse checks they detected four shoppers with irregular heart rhythms for referral.

Heart Rhythm Week hits the headlines In total, Heart Rhythm Week received a phenomenal 14 million impressions in print across the world, from coverage in the Glasgow Herald in Scotland, featuring Nicola McGillvray, to national coverage in the Daily Mail sharing Cerys and Evan Owens story. We are extremely grateful to all STARS members who shared their story for Heart Rhythm Week.

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Save the date – Heart Rhythm Week 3-9 June 2013 If you would like to find out how you can get involved next year, contact pippa@stars.org.uk

✆ 01789 450564 @ info@stars.org.uk

➚ www.stars.org.uk

Would you know what to do if someone fainted?

What to do in the event of a faint …

1. The first thing to do in this situation is to carefully lower the person to the floor so that they are flat. We can all work with a lower blood pressure if the heart and the head are on the same level. In most people who faint, this simple action will help them start to come around.

2. Once the person is laid on the ground, try to rouse them by shouting or calling their name.

If they do not seem to come round, check if they are breathing. If they do not seem to be breathing, shout for help, call 999 and start basic life support.

3. If they are breathing and seem to be sleeping, or muttering, then gently raise their legs as this will help encourage blood to circulate in the head and upper body. This will help to bring them round and back to consciousness sooner.

If the person is a lady in a skirt (or a chap in a kilt) remember to preserve their modesty!

Dr Fay advises what to do if someone faints In the course of my work as a general practitioner based in Shipley, a small town just north of Bradford, I regularly see people who have suffered loss of consciousness, that is to say that generally they have fainted.

4. If this method is not working and the person does not seem to be recovering, call 999.

5. When the person comes round, try to persuade them not to jump straight up, but maybe sit, slightly reclined while someone gets them a glass of warm water to drink down quickly to encourage their blood pressure to stabilize.

Syncope is a medical term for a faint that is caused by a sudden lack of blood supply to the brain. The result is a collapse to the ground or a slump across the dinner table.

6. I find that in many people who faint, they awake to find they have become the centre of attention.

If they are coming round, send the crowd away to watch something else, allowing the patient to slowly return to a fully alert state. Always advise them not to drive home but to wait until they are better or preferably get someone to take them home.

People’s stories are different and their response both physically and emotionally depends very much on the person and what has gone before. As GPs, we always take time to look for the cause of the collapse and try to ensure that it will not happen again.

One thing that seems to be consistent in all the tales that I am told is that no one seems to know what to do if they are with someone who faints. Many are helped to sit up or even try to stand. I have even been told of someone coming round to find themselves sitting up and being dabbed by a wet handkerchief as we may have seen in a black and white Hollywood film! I was not surprised when the lady informed me that she promptly fainted once more.

If someone loses consciousness, it may be caused by a simple faint or something as serious as a cardiac arrest.

Top tips to remember: • • • • •

Lie the patient flat Try to rouse the patient. Check if they are breathing. If not breathing, call for help Gently raise their legs to speed recovery Preserve the patient’s modesty Don’t let them drive home, give them a lift Dr Matt Fay, Bradford GP with a special interest in arrhythmias Member of STARS Medical Advisory Committee

STARS, PO Box 175, Stratford upon Avon, Warwickshire CV37 8YD

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We love STARS! Our ‘POTSie’ story began in March 2010, when our 15-year-old daughter Ella, came home from a school trip fainting. We had no idea just how our lives were about to change!

The first time she fainted she had complained of feeling unwell. Ella was totally exhausted, and experiencing severe chest pains, which she had been getting sporadically for the past year, but had been put down to muscle strain by our GP. Ella fainted a few times the following day and ended up in a Prague hospital on a school trip with no diagnosis. A very relieved looking teacher handed her over to us at the airport in a wheelchair!

The following morning, Ella got out of bed and fainted!

She showered and fainted, came downstairs and fainted! Our GP sent us straight to A&E. They watched as Ella fainted, took observations, asked questions and then sent us home. A week later, still fainting regularly, Ella was admitted to the children’s ward and kept in overnight. We were asked if anything was stressing her, and assured that this was common in teenage girls and the fainting spells would probably stop without any need for medical intervention.

We were sent home and told to get in touch if things didn’t improve.

Needless to say they didn’t! Ella was fainting all the time. She collapsed so regularly that she bathed in a bikini. Whenever she ate a meal her stomach bloated and she would faint. It didn’t make any difference if she was lying, sitting or standing, she could faint in any position. She began forgetting words and occasionally lost use of her limbs. She found it hard to sleep at night, had terrible migraines, heart palpitations, regular chest pains, pins and needles and often felt dizzy. Her faints varied from a couple of minutes to over an hour and she would sometimes ‘wake up’ confused and disorientated or in a post seizure state.

We contacted the paediatric consultant who immediately admitted Ella into hospital. She had repeated tests; including blood, heart and brain scans.

We also took Ella to see a psychologist who saw her faint and diagnosed her condition as physical not psychological. Four months later we were feeling totally out of our depth.

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“The following morning, Ella got out of bed and fainted. She showered and fainted, came downstairs and fainted!”

Our lovely paediatric consultant was fast running out of tests when Ella reacted badly to a 24-hour fasting test and was transferred as an emergency to Great Ormond Street Hospital (GOSH). Four days and many faints later GOSH were none the wiser and wanted to discharge Ella. It was then that I ‘lost it’ and they agreed to send Ella for a ‘tilt table test’’ in a last ditch attempt for a diagnosis.

Bingo!! Tilt test proved positive for vasovagal syncope! We were told it was blood pressure related, commonly found in teenagers with growth spurts, (meanwhile Ella hasn’t grown since she was about 11 and is just under five foot) and something she will grow out of. Ella was shown specific exercises to try daily, told to eat more salt, drink three litres of water a day, and if this failed there were drugs to try. GOSH were great, but frustratingly another four months later we were hardly any further forward.

“We were feeling totally out of our depth” GOSH then put me in contact with Jenni at STARS. I described Ella’s symptoms to Jenni, who mentioned ‘POTS’. Ella ticked nearly all the boxes, including fainting after meals, and I was given the number of a Professor Mathias at St Mary’s Hospital in London.

Professor Mathias has proven to be our Knight in Shining Armour. Within 20 minutes of our first consultation he had Ella sussed. He asked her loads of questions and was particularly interested in the fact that she was so flexible. He explained that Ella’s autonomic system was not functioning properly and that her brain and heart were not working together as they should. Apparently Ella’s heart rate was far too fast for her low blood pressure and her blood was not circulating properly, pooling in the bottom of her legs.

We learnt that ‘POTS’ was defined by a rapid increase in heartbeat of more than 30 beats per minute, or a heart rate that exceeds 120 beats per minute on standing. We also learnt that teenage girls were

✆ 01789 450564 @ info@stars.org.uk

➚ www.stars.org.uk

susceptible to ‘POTS’, which could be triggered by a viral infection, exhaustion, dehydration or physical trauma. Patients with Ehlers-Danlos Syndrome 111 (EDS111), a form of joint hyper-mobility, were particularly susceptible. Two days of autonomic testing and a visit to Professor Grahame, a consultant in rheumatology, confirmed that Ella had POTS, orthostatic hypotension, vasovagal syncope and EDS 111. We finally had a diagnosis!!

When Prof. Mathias began Ella on medications he explained that every case was unique and it may take time to find the right treatment for her. A year on and Prof. Mathias is still regulating Ella’s medication, and she has just been diagnosed with a deficiency of vitamin D and low bone density. Ella started with fludrocortisone and then midodrine was added and slowly her dosages increased until she began fainting less and less. She was referred to Prof. Franks who prescribed oestrogen which drastically reduced her monthly cycle faints, and Prof. Luxom who prescribed pizotifin for her horrendous migraines. Ella was advised an appropriate diet and to exercise as much as she could.

Ella does still faint, especially when she comes down with a cold or infection. However, she is now dancing, horse-riding and swimming. Her school have been amazing and tailored her timetable to her needs.

University once again seems possible!

Thanks to the hard work and sheer tenacity of ‘STARS’, ‘POTS’ will eventually become familiar terms in the medical profession. We personally can’t thank them enough for their practical advice and support, especially, Jenni, who is always there with a listening ear! Thanks to the wonders of medication and lifestyle changes, Ella is enjoying life again. Our aim now is to help ‘STARS’ in spreading awareness so that others can benefit in the same way.

Adrianne Landsman London

Read the full version of Ella’s story on the STARS website http://www.stars.org.uk/patient-stories/pots-case-studies

Long-service award for chairman of STARS trustees

STARS Patron launches new venture

Congratulations to STARS trustee, Andrew Fear, who was recently presented with a Prison Service award for long service and good conduct.

STARS Patron and Michelin-starred chef, John BurtonRace, has teamed up with food entrepreneur Jonathan Davies to launch a revolutionary new dining concept called The Restaurant Experience, where members of the public will dictate the workings of a restaurant. John Burton-Race, who has been an avid supporter of the STARS charity for many years, comments: “This is the Big Brother of restaurants as the public will have full control of everything. It really is the first restaurant that is completely for the people, by the people”

He joined the Prison Service 23 years ago.

Andrew has been a volunteer for STARS for nearly 20 years and became chairman of the trustees two years ago.

He is committed to attending Patients’ Day so many of you will recognise him.

www.the-restaurant-experience.com.

STARS, PO Box 175, Stratford upon Avon, Warwickshire CV37 8YD

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Ask the Expert column Dr Nicholas Tullo, cardiac electrophysiologist, answers your questions

What are the main causes of syncope in older people?

Maintaining consciousness depends on our body’s ability to provide a continuous supply of oxygen and nutrients to our brain cells. The “final common pathway” that causes syncope in most individuals is a sudden decrease in blood flow to the brain. In general, the most common mechanism for a syncopal spell is a sudden drop in blood pressure. Another common cause is a drastic change in heart rate due to a cardiac arrhythmia. Sudden slowing of the heart, pauses, or the development of a very rapid heart rhythm can all result in a precipitous drop in cardiac output, resulting in loss of consciousness.

Older adults are more prone to fainting for a number of reasons unique to that patient population. Many of them have hypertension and are on multiple medications, which may cause the blood pressure to become too low.

Sometimes older patients lose their sense of thirst. As a result, they don’t drink as much water as they should, so there may be a degree of dehydration that predisposes them to develop low blood pressure. There may also be mechanical reasons for an unstable blood pressure, such as severe valvular heart disease.

Older people will sometimes lose the ability to sense changes in blood pressure – they lose the “early warning system” and don’t feel symptoms such as light-headedness that younger people tend to get if their blood pressure begins to drop. This can cause “drop attacks,” or fainting with no apparent warning, as they don’t notice the usual prodromal symptoms that often precede syncope. Finally, the autonomic nervous system, which is responsible for regulating blood pressure and heart rate, may not work properly in older individuals. This can lead to conditions such as orthostatic hypotension or carotid sinus hypersensitivity syndrome, two causes of syncope that are not uncommon in older patients.

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“An ECG is essential to detect evidence of arrhythmias.”

When I evaluate an older person who has fainted, the history is very important, but frequently they are not able to adequately describe what happened and we have to rely on witnesses to help determine the most likely cause. Once I have gathered the patient’s history, I will carefully evaluate the patient’s medications to see if any of them could potentially result in hypotension (low blood pressure) or inappropriate slowing of the heartbeat. Measuring the blood pressure in various positions (lying, sitting, and standing) helps to get a sense of whether there’s a degree of orthostatic hypotension that may play a role in the cause of syncope.

An ECG (echocardiogram) is essential to detect evidence of cardiac conduction system disease or arrhythmias. Echocardiography is useful to rule out the presence of structural heart disease, because valvular heart disease may affect blood pressure, and if there is evidence of any heart muscle problems like an old heart attack or heart muscle weakness then serious or even life-threatening cardiac arrhythmias need to be ruled out. Cardiac monitoring has a relatively low yield, unless the patient has symptoms while they are wearing the monitor. Syncope patients frequently need provocative testing such as a tilt table test or an electrophysiologic study to uncover intermittent abnormalities in blood pressure and/or heart rhythm.

The cause of infrequent episodes of syncope can frequently be diagnosed successfully with an implantable loop recorder (ILR). Above all, the evaluation needs to be tailored to each individual patient.

Dr Nicholas Tullo Cardiac electrophysiologist, West Orange, New Jersey Member of STARS Medical Advisory Committee

✆ 01789 450564 @ info@stars.org.uk

➚ www.stars.org.uk

The diary of a 56-year-old who couldn‘t stay on her feet Michele shares her journey to diagnosis through her personal diary.

I am 56 years of age and lead a relatively normal life.

Around three years ago I had gluten-free muesli for breakfast. All should have been fine. However, around lunchtime I felt quite tired and nauseous which led to sickness. This left me feeling exhausted and totally cold. It was at this point that I collapsed in my bathroom. Around mid-afternoon I awoke and managed to crawl on my hands and knees and get into bed. I then slept until the following morning and once again I was back to my normal self.

Saturday 30 July 2011 Once again I had gluten free muesli for breakfast.

At lunchtime I left home to visit my mother. An hour later I began to feel tired and collapsed in my mother’s living room where I lost complete use of my body and could not move at all. An ambulance was sent and they spent 40 minutes outside my mother‘s house trying to stabilise my blood pressure. I was hypothermic and my heart rate was really slow. Once in hospital, I was connected to a drip and had blood taken, later in the evening, I was sent home. No more muesli for me!

Friday 12 August Once again I collapsed experiencing the same symptoms as before and was taken to hospital. I was admitted with suspected Addison’s disease. A very nice and well-meaning doctor said that if my slow heart rate was the problem I was not to worry because it was something which could easily be rectified by fitting a pacemaker. In my confused state I remember saying to him, “I thought you were here to make me feel better”. Surely, pacemakers were for people with heart problems, not people who kept collapsing.

How wrong could I be!

“It was decided that I needed a dual chamber pacemaker.

This was quite a shock.”

Tuesday 27 September I attended Sheffield Northern General Hospital for food allergy testing and tryptase. Results were negative-no food allergy.

Tuesday 1 November From 1 November to the beginning of January I was in and out of hospital for tests in cardio respiratory, neurology and finally syncope where I received a tilt table test.

Thursday 5 January 2012 I attended an appointment with my syncope sister and cardiologist. During this visit the results of my tilt table test were discussed and from here it was decided that I needed a dual chamber pacemaker. This was quite a shock. Was I shocked or delighted or just overwhelmed? I wasn’t sure. After all that had happened in the past few months, things then progressed so fast. By mid-January I was admitted to hospital for my pacemaker implant.

During this visit I had a 24-hour heart trace and CT scan for my bowel and brain. Still no further forward, I was then discharged a few days later.

I then returned to work on the 23 January with something which looks like nothing more than a scratch just under my collar bone.

Monday 12 September Returned to work but was really tired when I came home.

Sunday 1 April 2012 I haven’t lost consciousness since my pacemaker was implanted. I have had a couple of occasions when I have felt unwell but this must be due to my low blood pressure. Now I am aware this is what makes me feel ill, I can cope. Knowledge is the key as far as I am concerned.

Wednesday 14 September Around 9.30am lost all my energy. I rang the doctor who sent an ambulance. I was taken to hospital again.

I was discharged around lunchtime after being checked over. The following day I was out on sick leave for two months.

Michele Turner, Bradford

STARS, PO Box 175, Stratford upon Avon, Warwickshire CV37 8YD

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Psychogenic Blackouts “A psychogenic blackout can be difficult to diagnose. Most often it occurs in young adults, as a result of stress or anxiety.”

What is a psychogenic blackout?

Psychogenic blackout is a medical term for a blackout that can look like reflex syncope or an epileptic seizure but is not related to either.

seen an attack, describes it in detail. Although a psychogenic blackout does resemble an epileptic seizure or reflex syncope, there are small but important differences between these types of attacks: • Psychogenic attacks tend to be numerous, often occurring several times a day, or at the same time each day. This differs from reflex syncope (vasovagal syncope, neurocardiogenic syncope) which is typically no more frequent than four or five times a year.

• During an episode, the eyes may be tightly closed with a lid flutter, whilst during reflex syncope or epilepsy the eyes are often open.

During a psychogenic blackout, people lose some control of their body. Attacks might involve: • • • • • •

Passing out and falling to the floor Jerking movements of your arms or legs Losing control of your bladder or bowel Going blank or absent Feeling out of touch with your surroundings Inability to remember the attack

Some of these symptoms can lead people to confuse these attacks with other causes of blackouts such as reflex syncope or epilepsy.

How is a blackout diagnosed?

A psychogenic blackout can be difficult to diagnose.

Most often it occurs in young adults as a result of stress or anxiety. However, the link between blackouts and stress may not be obvious. ‘Psychogenic’ does not mean that people are ‘putting it on’. In most cases a psychogenic blackout is an involuntary reaction of the brain to pressure or distress. Psychogenic blackouts sometimes develop after people have experienced ill treatment or trauma. They are sometimes a reaction to a horrific experience in the past which a patient has not able to come to terms with.

Specialists in treating blackouts (such as electrophysiologists and neurologists) can sometimes make a clear diagnosis when you, or someone who has

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• Patients can experience psychogenic syncope when they are lying on their back.

• Typical symptoms associated with reflex syncope, such as looking pale or becoming sweaty, maybe absent.

• A psychogenic blackout often lasts much longer than reflex syncope.

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➚ www.stars.org.uk

What causes psychogenic blackouts?

The medical profession is gradually beginning to recognise and understand what causes blackouts. It is accepted it is not caused by physical problems and it happens for different reasons in different people.

It is likely a psychogenic blackout can happen when there is a temporary problem with the way the brain is working. The brain may become “overloaded” and “shut down” for a short while when faced with some kind of threatening feeling, situation, thought or memory. Although it is thought stress plays an important part in these attacks, people can pass out at times when they do not feel particularly stressed.

problems, ill health, bereavement and money worries or even just the stress of living with psychogenic blackouts.

In recent years it has become clear psychogenic blackouts are not uncommon amongst students struggling with the stresses of examinations and school life, peer pressure and the worries of getting their first job. These sorts of blackouts often become much less of a problem after college or university life.

How can stress be the cause?

It is very common for people to think there must be a physical cause for psychogenic blackouts. They are physical symptoms after all. However, there are many examples of how emotional stress can cause physical reactions in the body. These include blushing when you are embarrassed, feeling “butterflies” in your stomach when you are nervous, and getting a headache when you have been worrying or have had a bad day.

Another familiar idea is someone fainting when they are shocked.

When emotional stress is particularly severe or has been going on for a long time, more serious physical problems can arise. In some cases this leads to disability. There are many conditions where stress is thought to play a part, including chronic fatigue, postural tachycardia syndrome, non-cardiac chest pain, fibromyalgia and irritable bowel syndrome.

It may be that not all psychogenic blackouts/ non-epileptic attacks are caused by stress but further research is needed to answer this.

Sometimes the first attacks are related to an upsetting or frightening experience, or some other great loss or change. These experiences may be recent or in the past. Sometimes it is not clear why attacks have started, or they seem to have started just as some life stress was getting better. Stress can also make it difficult for a person to get over their attacks once they have started. Examples of this include relationship

This is an excerpt from the new STARS Psychogenic Blackout booklet, written with Dr Markus Reuber, reader and honorary consultant neurologist, Royal Hallamshire Hospital, Sheffield. The booklet will be available at STARS Patients’ Day.

STARS, PO Box 175, Stratford upon Avon, Warwickshire CV37 8YD

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Thank you for supporting STARS We would like to say a massive thank you to everyone who has supported STARS over the past six months. Whether you have made a donation, participated in a fundraising event or volunteered your time; we really appreciate all your support.

From skydiving, cake sales and fun runs to dressing up, here is what some of our fundraisers have been up to.

Sam and Darren Godfrey kick-start the fundraising for STARS in 2012 by participating in the Silverstone Half Marathon in March and raised over £150.

Thank you Sam and Darren.

On one of the hottest days of the year in May, Chris Manders took to the streets of Edinburgh to participate in the Edinburgh marathon, raising £630.

A fantastic achievement!

Well done Chris.

Nick Daglish walked from Weston to Scotland to raise money for STARS. What an amazing challenge and what a fantastic achievement.

Well done Nick!

A conversation between friends led to Fiona Tennison agreeing to participate in a tandem skydive. Over £400 was raised from the death defying leap.

Thank you so much Fiona.

Matt and Pete from Dorset participated in a tandem skydive in April, jumping from 30,000ft and raised almost £300 for STARS. Thank you to both of you.

St Mary’s School in Buckinghamshire dressed up for the day and raised almost £200. Thank you to everyone who participated.

Alasdair Bennell headed west to participate in the Great West Run in Exeter and raised over £400.

Thank you Alasdair.

Zoe Geary took to the streets of Sheffield, competing in the Sheffield Half Marathon, raising over £100. Well done Zoe. The sale of home-baked goodies at NHS Salford and John Sisk Ltd raised over £100. Thank you to all those who made and bought the goodies.

Tarn Pollard and her daughters, sold homemade cakes and raised £85. Thank you, they looked delicious!

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Chris Manders participated in the Edinburgh Marathon

Over the past twelve months Joshua Moore has been selling unwanted items to friends and family, donating the proceeds to STARS. What a brilliant idea.

Thank you Joshua.

A very special thank you to Emma Riley and her family for nominating STARS to receive the donations made in memory of her father Gary Riley who died in April. The generosity of his family and friends is very much appreciated.

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✆ 01789 450564 @ info@stars.org.uk

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♥ Fiona Tennison participated in her first skydive

➚ www.stars.org.uk

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Three STARS members struggling with POTS accompanied by friends, family and a dog, set out to walk up Mount Snowdon. Over £1,000 was raised and monies were split between STARS and PoTS UK. Well done to you all!

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Andrew Leslie’s work colleagues forwent Christmas Cards and instead made a donation to STARS. Thank you, what a fantastic idea.

Three STARS members climbed up Mount Snowdon

Bertie and Esther Coleman, parents of STARS Trustee, Cathrine Reid, have recently celebrated 50 years of marriage and asked that no presents be given but donations made to STARS and their local hospice.

Congratulations and thank you so much for remembering STARS and raising a fabulous £510.

KoolKidz nursery dressed up for the day

We were very honoured to receive a cheque from Angela Clayton in memory of her husband, John who died in May. She and her son, Michael, chose STARS to benefit from these donations to help us continue our support of these debilitating conditions.

Thank you very much.

Jodie aged 14 and her friend Emily aged 13 participated in a 12-mile bike ride and raised an amazing £350 for STARS. A fantastic achievement, well done!

Stephanie Foster organised a different fundraising event each day during Heart Rhythm Week and raised £200 including Gift Aid. Thank you Stephanie, they all sounded brilliant.

Mr Edwin Airey made a donation of £200. Thank you for your very kind gesture.

Jodie and Emily cycled 12 miles for STARS.

KoolKidz Nursery dressed up for the day as princesses and superheroes raising £375 for STARS. Thank you to all those who took part; you all looked fabulous.

A big thank you to Maidstone Borough Council who have kindly donated £3,000 to STARS, after STARS was nominated as one of their charities for 2011/2012.

£250 was donated via Mr Whiteman and the Freemasons. Thank you for your extremely kind gesture. ♥

Bertie and Esther Coleman celebrated their 50th Wedding anniversary and raised money for STARS

Ms Cathy Guthrie donated £150.

Thank you for your continual support. ♥

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Share your fundraising stories If you would like your fundraising achievements highlighted in the next newsletter, please get in touch.

If you have felt inspired by our fundraisers and would like to participate in your own fundraising activity, whether it be organising a cake sale or climbing Mount Everest, then email fundraising@stars.org.uk or telephone 01789 450 564.

♥ Tarn Pollard and her daughters bakeathon

STARS, PO Box 175, Stratford upon Avon, Warwickshire CV37 8YD

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Collections in your local community We are looking to increase the number of STARS charity collection tins in circulation. Do you know anywhere in your local community who would be willing to house one of our collection tins? Please get in touch with STARS.

Charity of the Year?

We would love to be yours Do you work for a company who would be willing to support STARS as their charity partner?

There are lots of ways your company can get involved, from choosing us as your Charity of the Year, entering teams into fundraising events, or by hosting a collection tin. The options are endless. If you think your place of work would be willing to support, contact STARS. es Seizur

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Drive away in a brand new car with the Great Big small Charity Car Draw.

Tickets cost £2 each. Entry into the car raffle must be made by 4 January 2013. The winning number will be picked at random from all the sold ticket numbers at the Foundation for Social Improvement Workshop on 19 Februray 2013.

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For your chance to win a brand new Kia Picanto visit our website http://www.stars.org.uk/get-involved/ Charity%20Car%20Draw.

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Please help STARS by supporting the STARS Annual Raffle!

Ask your family and friends to buy a ticket and be in with a chance of winning £100, £75, £50.

All tickets must be returned by 30 November 2012 Raffle to be drawn on Wednesday 5 December 2012 For all STARS fundraising enquiries, please contact the fundraising team on 01789 450 564 or email fundraising@stars.org.uk

✆ 01789 450564 @ info@stars.org.uk

➚ www.stars.org.uk

Jodie and Buddy’s story My story is about a treatment for Postural Tachycardia Syndrome (POTS), a very special treatment. A labradoodle called Buddy.

When I was first diagnosed with POTS and syncope in 2009 I had to quit university and move back home.

I was unable to care for myself, eat properly, sleep properly; I could hardly even get myself out of bed!!

I spent so many days on my own wondering what to do with myself, feeling angry about being unable to do things and grieving for the life I lost as I watched my friends move forward in life and going out having fun.

Around six months later my parents thought it would be a good idea for me to get a dog. I needed company, responsibility and something to fill some of the minutes in my very long days! I had recently been diagnosed with Ehlers Danlos Syndrome (the cause of my POTS). We hoped that bringing a dog into my life could encourage me to leave the house, exercise and give me a reason to get up out of bed in a morning.

“Not only has Buddy supported me physically, but also emotionally.”

Buddy Doodle bounced into my life at nine weeks old in February 2010. I had just turned 20 years old but felt like I was living in the body of a frail 70-year-old.

Despite my symptoms, I had been preparing for the arrival by walking around the block for a few months before to ensure I was fully capable of looking after a puppy. My walking improved every day.

When Buddy was six months old I found out about a local charity called Dog A.I.D (Assistance In Disability) who offered training for the pets of physically disabled adults. I jumped at the chance and joined Dog A.I.D classes in June 2010 when Buddy was just six months old.

At 22 months old my fluffy, bouncy, little doodle became a fully qualified assistance dog. He passed his final exams in October 2011 and by then my life had completely changed! I had gone from being stuck in bed all day, struggling to walk from one room in the house to another, to using a wheelchair and learning

to walk short distances, to being able to walk my beautiful boy for up to an hour on the park. I now even go swimming and ice skating as well as walking every day.

Buddy supports me with my POTS by walking beside me in his special harness helping me to balance whilst I walk, preventing me from falling as often. When I feel a syncope episode coming on I can ask him to stand still whilst I lower myself onto the floor slowly and gently. He will then give me kisses, nudges or paws lightly on my arms to try and keep me conscious. If I do fall unconscious he can bark for help and will often try to wake me up with kisses. He helps me to come back round quickly without too much confusion, just like a recognisable face and voice can help you come round from a syncope episode!

When I am in the house and have an episode, he will follow this similar procedure but he has also learnt to find my mobile phone and bring it to me. When I wake up, on command, he will bring me a drink of water and my medicine bag.

Not only has Buddy supported me physically, but also emotionally. I still have bad days with POTS and have the occasional full syncope episode, but the good days more than make up for these! I’m so proud of my doodle and thankful to Dog A.I.D for helping him to help me!

Jodie Griffin and Buddy Doodle www.buddy-doodle.com www.dogaid.org.uk

STARS, PO Box 175, Stratford upon Avon, Warwickshire CV37 8YD

13

It isn’t breath holding!

At ten months, Abi stopped breathing.

Rushed to hospital, she was monitored through the night then sent home with an explanation of breath holding.

A month later, she had three episodes in a week.

I was not convinced that breath holding was correct, so I requested a referral to a paediatrician, who again diagnosed breath holding with no further tests.

As Abi grew, her episodes became more frequent and more aggressive. She started to not only pass out, but was having ‘fit like episodes’ which gave us more reason to suspect that she had been misdiagnosed. We pushed again for a referral, only to be reassured it was breath holding, and these episodes were completely safe.

After watching an online video of a small boy experiencing an episode like Abi’s, we then realised there was a high chance she could be suffering with reflex anoxic seizures (RAS). Sadly the doctors knowing little of RAS, disagreed with our concerns but we knew there was something amiss.

Searching for information, we came across STARS who, from day one, offered us the best help and advice! From my initial conversation with Jenni, I was so relieved that somebody understood how we felt. She explained the condition, along with recommending our next step which was to request a referral to a paediatric cardiologist.

At this point Abi became unwell and was admitted to hospital as her heart rate and temperature had spiked to a dangerous level. EEGs, ECGs and Echo tests confirmed there was not underlying heart condition so RAS was the only explanation.

We still wanted our referral to Dr Jan Till at The Royal Brompton Hospital who confirmed the RAS diagnosis - one and a half years after Abi’s first attack and our constant pushing! Currently we are waiting to have an event monitor fitted to record how long her heart stops during an attack and whether a pacemaker is required.

As a family we have had a tough journey and realise how much harder it would have been without the support of STARS. They were there to reassure us and help with advice. They have played a big part in obtaining a diagnosis for Abi and I urge everyone with similar concerns to talk to them. They really have been a blessing to us.

Cherish Ayres West Sussex

14

✆ 01789 450564 @ info@stars.org.uk

➚ www.stars.org.uk

STARS Education New school?

New term?

@ info@stars.org.uk ➚ www.stars.org.uk ➚ www.stars-us.org ➚ www.stars-international.org

STARS, PO Box 175 Stratford-upon-Avon Warwickshire, CV37 8YD UK

✆ +44 (0) 1789 450 564

The Syncope Toolkit has been produced with the guidance of STARS International Medical Advisory Committee

If your child is due to transfer from nursery to Syncope Toolkit primary school or from primary to secondary school, then the STARS Education DVD and accompanying booklet is a perfect means to ensure that all the www www.stars.stars.org.uk -internatio nal.org concerns the school may have are addressed and you and your child can happily look forward to a new school year.

Follow us on Facebook and Twitter Join thousands of our followers online and get interactive!

Endorsed by

Affiliated to

Telephone:

+44 (0) 1789 450 564 PO Box 175 Stratford upon Avon Warwickshire CV37 8YD UK

Email : info@stars.org. uk Website:

www.stars.org Working together .uk Registered with individuals, Charity No.: offer support 1084898 ©2010 families and and information medical professional on Syncope and Reflex s to Anoxic Seizures

POINT-O F-CARE RAPID ACCESS TO BLACKO UTS CLINIC

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STARS PO Stratford-up Box 175 on-Avon Warwickshire CV37 +44 (0) 17898YD UK 450564 info@stars.o www.stars.o rg.uk rg.uk

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The DVD includes three chapters: an introduction to syncope and our patient organisation, advice on managing syncope in school and advice from parents and syncope specialists. Explanations on what syncope is, what happens in the event of a syncopal episode and how to enable a child to participate in all school activities, are included.

If you or your school is interested in obtaining this Education DVD please send a cheque for £5.00, to cover postage and production costs payable to STARS, to Jenni Cozon, STARS, PO Box 175, Stratford upon Avon, Warwickshire, CV37 8YD

Follow us on Twitter @BlackoutsTrust for daily updates on our fundraisers and events across the country. You could also ‘like’ us on Facebook where our team of dedicated staff will answer your questions. Share your thoughts and experiences of living with syncope or reflex anoxic seizures with other patients and carers. You could join discussions or even spark a conversation yourself!

Support STARS and become a STARS subscriber ‘Take syncope to heart’, STARS bi-annual newsletter, is free to all our members and we hope that you will find something of particular interest to you. Many of you support our work by subscribing, for which we are very grateful, as it is only your subscriptions and donations that enable us to maintain the STARS helpline, research conditions and produce new information booklets.

STARS subscriber benefits:

Alert cards ORDER YOUR PACK NOW!

•

Access to subscribers only area on the STARS website with publications, archive newsletters and e-bulletins

•

Opportunity to submit questions to Ask the Experts panel

•

Qualify for a discounted entry to STARS annual Patients’ Day (full rate £50 and subsidised rate for STARS subscribers £25)

•

View STARS UK and international database of RAS and Syncope clinicians

Workin g toge ther wi profes th indi sionals viduals, to offer familie suppor s and m syncop t and in edical e and re format flex an ion on oxic se Helplin izures e:

+44 (0 )1789 45 Email: info@ 0564 star W .org.u (this is not connected to epilepsy and is NOT life threatening) k

NAME:

s.org.uk eb: ww I suffer with SYNCOPE w.stars

For only £1 we can send you a pack of STARS Syncope or RAS alert cards. They are popular with all ages because of the simple manner in which they inform and protect.

Please make sure I am safe

yncopePlease put me in the recovery position - ALER T CAquietly RDS.indto me and wait for me Please talk d 2

to regain consciousness (normally only 1 or 2 mins)

CALL IMMEDIATELY:

If injured or concerned also call for EMERGENCY SERVICES - 999

yncope - ALERT CARDS.indd 1

12/07 /2012 10:43 :

12/07/2012 10:42:

The size of a credit card, these cards provide key information for new carers, work colleagues, family friends, schools and the general public.

To order, send your full name, address, the name of your condition and £1.00 to Jenni Cozon at: STARS, PO Box 175, Stratford upon Avon, Warwickshire. CV37 8YD

To become a STARS subscriber, please complete and return the blue subscribers form enclosed in this newsletter.

STARS, PO Box 175, Stratford upon Avon, Warwickshire CV37 8YD

15

Patients’ Day Agenda Sunday 23 September 2012 New venue, The ICC, Birmingham 10:00 Triggers and symptoms of Reflex Anoxic Seizures 10:30 Pacemakers for patients with neurocardiogenic syncope?

W Whitehouse

A Brandes

11:00 Break

13:30 POTS Clinics – The way forward

M Ferrar

14:00 Patient story: My journey to diagnosis

D Cooke

“The quality of knowledge from all the speakers was excellent.

Even after 15 years I heard new theories and new ideas, all of which helped me understand a bit more of what is going on and perhaps why.”

14:15 Is it in the age? Syncope in older adults

M Fay

David, Lincolnshire

14:45 POTS: Diagnosis and treatment options

K Rajappan

15.15 Question time

All

11:10 Fight or flight: Psychogenic syncope causes real problems

N Gall

11:40 Exercise for syncope and POTS

D Lowe & E Caldow

12:20 Ella’s Story

E Landsman

12:30 Lunch

15:45 Close A full day meeting with refreshments and lunch. STARS is able to offer subsidised rates of £25 per delegate to all STARS subscribers and their carers registering directly through STARS – a discount of 50%. Cost to non-subscribers £50.00 Personal details

Address:

Full Name: Telephone: Email:

Postcode:

Please tick the box whether you are: Please record the name of each person attending with you:

Subscriber

Non-subscriber

Patient Carer/Friend Vegetarian

Gift Aid is a government scheme which allows us to claim tax back from the Inland Revenue. For every £1 donated, we can claim an extra 25p. To enable us to claim gift aid you must be a UK taxpayer and pay an amount of income/capital gains tax at least equal to the tax to be reclaimed on your donations. I would like Syncope Trust And Reflex anoxic Seizures (Registered Charity No. 1084898) to reclaim the tax on all donations I make on or after the date of this declaration until I notify them otherwise.

Sign .................................................................................................

I enclose a cheque payable to STARS for £

Date .......................................................................

/ I enclose a postal order for £

Please send completed registration form to: STARS Patients’ Day, STARS, PO Box 175, Stratford Upon Avon, Warwickshire, CV37 8YD Tel: +44 (0) 1789 450 564 16 © 2012 STARS Registered Charity No: 1084898