STARS Issue 29, September 2008

The uts o k c Bla rust T SEPTEMBER 2008 : ISSUE 29 WORKING TOGETHER WITH INDIVIDUALS, FAMILIES AND MEDICAL PROFESSIONALS TO OFFER SUPPORT AND INFORMATION ON SYNCOPE AND REFLEX ANOXIC SEIZURES

STARS raising awareness during AAAW ‘08

Patrons: Prof. John STEPHENSON, Dr William WHITEHOUSE, Prof. Christopher MATHIAS, Prof. Rose Anne KENNY, Dr Adam FITZPATRICK, Dr Wouter WIELING, Sir Roger MOORE, TWIGGY Lawson, John BURTON RACE, Sir Elton JOHN Registered Charity No: 1084898

SUBSCRIPTIONS AND DONATIONS Your subscriptions are what keep STARS up and running. Please renew your 2008 subscription Subscriptions are a minimum of £15/$25/€25 a year.

It is vitally important that you remember to renew your subscription. Without your help, we would not be able to provide our essential service to the families of RAS and Syncope sufferers. Thank you.

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Return to STARS, PO Box 175, Stratford Upon Avon, Warwickshire, CV37 8YD

PLEASE PAY: STARS, Account: 02423406, Sort Code: 30-98-26 Lloyds TSB Plc, 22 Bridge Street, Stratford-Upon-Avon, CV37 6AG The sum of: £/€/$ On (First Date) And after this, every

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My Work Experience at STARS

New Head of Fundraising

I have just spent my work experience week at STARS learning about the charity, how it is run and the wide range of conditions that need their support. I was very surprised at how big the charity actually was and, now that STARS is also in America, how global knowledge of the condition is increasing.

STARS is delighted to announce that from the end of July we will be benefiting from the expertise of Barbara Hampel.

Barbara has been appointed as Head of Fundraising for the Arrhythmia Alliance but will also be lending support to STARS in their fundraising activities and providing advice and help when needed.

Barbara’s first role as a fundraiser was with the Epilepsy Association and since then she has pioneered the first fundraising drive for Marie Curie Cancer Care in the West Midlands, before joining Macmillan Nurses. Latterly, she has been freelance as a Consultant Fundraiser.

“Barbara and I are really looking forward to developing further the strong foundations that STARS has already established and it is a pleasure to welcome somebody on board with the experience and reputation in the charity sector that follows our new Head of Fundraising” said Trudie Lobban, CEO of STARS.

All the staff were really supportive and friendly, and made me feel really welcome. I spent different days learning what each individual does, like organising conferences, raising awareness, fundraising, producing new leaflets and updating the web page, as well as providing support for the many telephone calls and email enquiries that are received daily.

It was really interesting to learn about how much preparation and hard work goes into successfully running the charity and the general structure.

I would recommend coming here for work experience! I really enjoyed my week and would love to come back again.

Katie Fifield Stowe

Join STARS at Arrhythmia Alliance Regional Meetings

REFLEX ANOXIC SEIZURES

Each year the Arrhythmia Alliance holds a series of regional meetings attracting patient and medical delegates. This year’s meetings have been so successful extra dates have been added to the Autumn calendar to include Wales, (9th October) and Northern Ireland (date still to be confirmed).

2008 agendas have included:

• An overview of Standard 7 (Arrhythmia NSF) • Inherited cardiac conditions

• Pathways for the investigation and management of patients with tachycardia and palpitations

• The role of the arrhythmia nurse • Protocols for cardiac arrest and ICD patients • Provision of integrated T-LoC services • Atrial Fibrillation and primary care

is a type of arrhythmia (heart rhythm disorder) occurring mainly in young children but can occur at any age. The sudden shock of pain, however slight, or indeed any un-expected stimuli, causes the heart and breathing to stop, the eyes to roll up into the head, the complexion to become deathly white, the jaw to clench and the body to stiffen often with legs and arms jerking. After 30 seconds or so the body relaxes and the heart and breathing restart. The sufferer may remain unconscious for one or two minutes or for well over an hour.

RAS is often misdiagnosed as breath-holding or, more seriously, as epilepsy.

SYNCOPE (pron: sin-co-pee),

Venues for 2009 will include: North West Northern Ireland London

North East South West Scotland

Wales Midlands

Reserve your place at the two 2008 meetings or register an interest in 2009 venues, please email Liz Breen at events@heartrhythmcharity.org.uk The Heart Rhythm Charity

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is a result of the temporary cutting off of the supply of oxygenated blood to the brain.

The mechanism of the syncope in susceptible individuals includes reflex cardiac stand still (always reversible) commonly following a surprising bump to the head or elsewhere. Recurrent syncope is perhaps one of the most challenging and, at the same time, most frustrating problems that is encountered in clinical practice.

info@stars.org.uk

A review of this year’s Arrhythmia Alliance Awareness Week in June organised by Arrhythmia Alliance, supported by STARS THE FIFTH annual Arrhythmia Awareness Week, AAAW ‘08, drew support from all over the world with hundreds of awareness events focused on cardiac arrhythmias.

Staged in the UK, support events were also held as far-a-field as China, the Middle East, Russia, USA and South Africa for the first time.

The 2008 Awareness Week organised by Arrhythmia Alliance (A-A) www.heartrhythmcharity.org.uk - was the best supported so far with a 50 per cent increase in the number of events held right across the country, (over 550 events), from the Orkney Islands to the Channel Islands and this year’s global gathering of awareness also saw events staged in Australia.

Having already received the support of Prime Minister Gordon Brown and the endorsement of former Prime Minister the Rt Honourable Tony Blair (who is Patron of Arrhythmia Alliance), Awareness Week 2008 was launched at Portcullis House, Westminster, in front of an invited audience including, patients, nurses, politicians, carers, doctors and cardiologists. STARS was well represented!

On the same day as the Westminster launch, a young man found himself on the shores of France having just rowed a single-skull across the English Channel to raise thousands of pounds for STARS (Syncope Trust and Reflex Anoxic Seizures www.stars.org.uk). His girlfriend is a sufferer of Vasovagal Syncope and he achieved the Herculean feat in three hours

forty-five minutes making him the second fastest person to row across the channel. You will find Christopher’s story on page 8 of this issue.

of the Awareness Week, a new chapter which heralds the start of a much more expansive growth pattern in terms of global support for Awareness Weeks of the future.

And while one man put his oar in for charity, school children in village schools around the country released hundreds of balloons from their playgrounds to help raise awareness of syncope. The events raised awareness as local newspapers were on hand to photograph the balloons float effortlessly upwards into the blue summer sky. Positive press coverage such as this was added to with a string of radio interviews undertaken for the BBC and independent radio networks in a drive to continue raising awareness among the listening public.

The importance of an Awareness Week is that it reminds people as well as being an awareness raising tool. It has the ability to remind because it acts as an influence on government’s decision makers and their obligation to published guidelines, and, the ability to make us aware of a medical condition which claims 100,000 lives prematurely each year. A-A is a strong advocate of correct diagnosis, early treatment and improved quality of life for all those affected by cardiac arrhythmias which is why an Awareness Week is such an important part of the national health calendar.

Elsewhere, individuals and groups of people emailed, wrote or rang the A-A office in Stratford-uponAvon and requested boxes of information, literature and posters for display. Many STARS members chose to back Awareness Week with their own individual events ranging from adopting a GP surgery, an information stand at their local hospital, balloon launches, barbeques and summer balls.

The importance of being a part of an alliance was demonstrated by the continued support people show towards raising awareness about cardiac arrhythmias whether they are a patient, carer, medical professional or fund raising supporter throughout the year.

A-A believes it is now beginning to see a new phase in the concept

Next year’s Awareness Week may well concentrate on trying to improve cardiac services across the UK and in particular in those NHS areas where the commitment to the 18 week time parameter has not been as rigorous as other parts of the country. It could be that in 12 months’ time the growth in global support may determine the agenda for AAAW ‘09, certainly there could be increased interest as was shown by the involvement of groups in the United Arab Emirates, Bolivia and China.

What can be concluded from this year’s Awareness Week is that it was well supported, it serves as a very important information platform and judging by public reaction – this annual event will be here for many years to come.

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info@stars.org.uk

Peace of Mind with MedicAlert all ambulance professionals are trained to look for medical identification.” Roland Furber, Chief Executive of the British Paramedic Association.

MedicAlert members wear either a bracelet, necklet, wristband or watch, known as an Emblem, which bears the international symbol for medicine and is engraved with important medical details and any other main medical conditions or allergies, a personal ID number and a 24 hour emergency telephone number providing access to the Member’s medical records and personal details from anywhere in the world in over 100 languages.

The MedicAlert Foundation is the only non-profit making, registered charity that provides a vital life-saving service for children and adults with hidden medical conditions and allergies.

MedicAlert provides peace of mind for people with conditions such as diabetes, epilepsy, complicated medication regimes or other hidden medical conditions.

How to become a Member

Medical Identification ensures that in an emergency situation those around you would know that you have a hidden medical condition. Wearing an Emblem also ensures that all information on medical conditions, medications, and next of kin is available.

Membership starts from £25 plus the cost of their choice of Emblem.

Anyone can join MedicAlert by calling freephone number 0800 581 420 or join online and view the entire range award-winning stylish jewellery suitable for children, women and men at www.medicalert.org.uk

“In an emergency situation it is essential that ambulance professionals receive as much information about a patient’s condition as quickly as possible. In many cases, the patient will not be able to communicate and as a first port of call,

Hearts and Minds Serendipity is a wonderful thing!

I was first acquainted with STARS when I attended a ‘Health Fair’ in Worplesdon, Surrey. Our Epilepsy Action stand was next to that of STARS and I got talking to their volunteer Alexandra Whitman (She is one of their first SIRs – STARS Information Representatives).

As we chatted, I began to see that we had a link insofar as symptoms of syncope could be confused with epilepsy. I immediately thought what an excellent idea it would be to have a SIR speak at my local Epilepsy Action Group in Guildford.

Sarah Boxall was our SIR for this meeting. She was fabulous,

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dividing us into four teams and asking us for one word reactions to different headings. It was a very effective way of making the group think about syncope and epilepsy – we all learned a lot in the process, including Sarah, I think!

As a result, those members present unanimously felt that it would be a good idea if a link could be set up between the Epilepsy Action website and the STARS website. Discussions are now in progress and we hope that this will happen sooner rather than later.

David Richens Epilepsy Action Guildford

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NOTE We have SIRS based all over the country and if anyone or group would like a SIR volunteer to visit a meeting and tell them about syncope and the work of STARS, please contact: jo@stars.org.uk

www.epilepsy.org.uk

info@stars.org.uk

Syncope sisters and brothers too..

“Lean on me, when you’re not strong. And I’ll be your friend, I’ll help you carry on, for it won’t be long, ‘til I’m gonna need, somebody to lean on” Bill Withers – Lean on me A little while back, a number of us who post regularly on the STARS syncope message board, were having great fun trying to think of songs, which related to syncope. As such the Syncope sisters and brothers got their names. So it was without too much effort, I came across the lyrics, which summed up what the ‘Message Board’ within STARS was all about.

I am sitting here in the sun writing this. I am watching my 3 year old son play on his slide, a wasp is industriously trying to strip wood from the table to make his nest, and the cheeky robin is trying to get the crust of the remains of a sandwich, next to him. Right now life feels pretty good.

It is a rare moment, and one I cherish. For when this ‘beast’

of ours seems to encroach into every area of our life, it is nice to have a moment where it does not seem to exist or bother us. It is with thanks to those within the support group, that I have learnt to take a step back and pace myself better. I am nowhere near ‘good’ at it yet, but as you can see I am getting there. Life at present feels like doing a jigsaw puzzle, but without the picture. I seem to have various issues going on, but it is learning what is attributed to POTS / NCS, and what other things are going on.

So with the metaphorical large shoulders of the support group, I am getting there. I think I have the edge pieces now…

It just goes to show, life is not as simple as a diagnosis. There are many other factors. How to learn to control it. How to deal with day to day life issues, let alone the way and severity this affects us. I think perhaps the biggest issue we all face, is the fact this cannot be ‘cured’, only controlled. Knowing this is something you have to live with for an indeterminate period of time, can be daunting to those who have just been diagnosed!

This is where the support group again comes into its own. There are those who have had this for a long while, and those who have had it a short while. There are even those who have to battle to get a diagnosis, which is probably the majority, not the few.

So what ever the circumstance, all are welcome in the group!

Some may find it very intimidating, as there is a lot of chatter, amongst what may seem a few. Come on in, everyone is really friendly and there is plenty of virtual wine, chocolates and cake to go around.

Which we all know is the best sort!

Oh there are tales I could tell from in there. There are those that get the attentions of gorgeous looking life guards.

There is certainly one Amazon like woman, who has fought everyone to get her diagnosis! Let alone a young girl, who has over come adversity and trigger points, to get where she is now. There are lots of others in there full of tales, a budding anaesthetist, someone who is training her dog to help with her syncope and there are two of us on there that are making jewellery, to which we are donating an amount to STARS! There is also one ‘mum’, who is virtually single handed organising a balloon launch in Scotland – hoping that she manages to cause air traffic a few scratched heads!!

So why not come and join in with the syncope sisters and brothers, share your tales, share you woes, and just have some fun, meet great friends and all the support you need!

Kristina Jackson Aberporth

STARS Syncope Message Board http://health.groups.yahoo.com/group/syncope/ For those of you who have not joined the Board this must be testament enough that there is support, information, help, not to mention fun and friends to be made, when you decide to take part.

It is always buzzing and your first posting will be answered with a stampede of ‘welcomes’.

For some of our members it is a lifeline at times, for others it is where they can share the excitement of a wobble-free day!

We look forward to welcoming you!

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info@stars.org.uk

Lucky Thirteen for the Marathon Man Thirteen may be unlucky for some but not for Christian Burge!!

organisers wisely decided to postpone the race!

Back in October 2007, whilst attending the Heart Rhythm Congress, I found myself listening to a very courageous young lady who had stood up in front of 250 strangers to talk abut her experience of living with unexplained syncope, paying tribute to the team at STARS who had supported her during her long search for a diagnosis.

I knew then that I could not think of a better charity to support if I was to attempt an ultra marathon.

The event kicked off again the next day at 5.00am with the distance reduced to just over 50 miles. Ironically, it was blazing hot towards the end of what was a totally awesome race – not sure that my wife agrees with this description! I was a little stiff and sore and was missing a few toe nails, otherwise I felt fine and a little lighter!

I chose the Jurassic Ultra Marathon – a marathon of 78.6 miles run over three days along the Dorset Jurassic coast. We had less than perfect weather! The race started on the Saturday night in driving rain and blustery winds and after 8 miles of being blown over along the cliff tops in pitch black, with the Met forecasting storm force winds overnight, the

I ran around 59 miles in about 11.40 hours. Total altitude climbed was 3987 meters (equivalent to climbing up the Empire State Building nine times!!).

Total descent was 4013 meters and I finished 13th out of 35 competitors – only 18 of us actually completed the marathon! Phew!!!!

Christian Burge Medtronic, SQDM By the way, Christian is very modest and forgot to mention that he raised well over £400 through his endeavours!! Thank you!!!

I may not be allowed to work but I can fundraise………

For the past few months, I have been giving home treatments, including facials, back massages and hand and feet massages to friends and family. I have raised well over £100.

What does a girl do when she is a qualified beautician, manager of a well known cosmetic counter in a local store then loses her job because of suffering with blackouts?

She picks up the telephone to STARS, where the community fundraising team is full of ideas as to how she can put her talents to the best use to keep busy and at the same time raise some money for STARS!!

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I realise that life is precious and you need to concentrate on what you can do, not what you can’t. I always focus on the goals that are achievable for me to keep my morale up. Don’t let syncope govern your life – inevitably it will affect your life but do not let it stop you doing things. I always remind myself there is always someone worse off than me. Keep your chin up when you have a bad day, which we all do. I have lots of friends at STARS who really do cheer me up and are always there for me, so thank you!

I am 21 years old and until recently worked full time, adored shopping

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and cherished my independence. I have suffered with blackouts since August 2006 and had various tests including EEG, ECG, tilt table test, brain scan and EP study and am now waiting to see what the next step is. In the meantime, as well as losing my job I often feel afraid to go out on my own and I have certainly lost my independence.

Luckily I am surrounded by family and friends and I have a very supportive boyfriend. I am determined that I will overcome this condition but, in the meantime, I am a member of the STARS moderated message board, giving support to new members who have just been diagnosed with syncope and, of course, I continue with my fundraising.

Rachel Sealey Cheshire

info@stars.org.uk

Love on the Ocean Wave

I am seventeen years old and a student at Canford School, Dorset and on Tuesday 19th June I successfully rowed the English Channel in a single scull (a one man rowing boat!) in aid of STARS. My girlfriend, Kellie, is a member of STARS and suffers with POTS. As I write this it is thought that I may have broken the world record as the youngest solo rower

to cross the Channel and I may even be the fastest British person to ever row the 24 miles in a single scull!! Everyone seems amazed that I managed to complete the trip in 3 hours 45 minutes – only ten minutes behind the world record held by a Norwegian – I was told it would take me between six and eight hours. Obviously they had not paid attention to my training!!!!

For about three months prior to my trip I spent every spare moment preparing for this adventure – not that easy as I was in the middle of my AS levels. I wanted to raise money for STARS as they have given Kellie enormous help and support during the past few years when she was fainting on average 10 times a day, which had a huge impact on our lives. Before STARS came into her life, Kellie’s fainting meant she was unable to attend school, had to put her rowing on hold and give up her social life and many other things

she loved.

She was eventually diagnosed with vasovagal syncope and POTS (postural tachycardia syndrome) and now takes Midodrine, which has greatly improved her quality of life.

Kellie is now back at school and leads a relatively normal life thanks to a significant reduction in the number of times she faints.

As I arrived back, my family, and Kellie and her mother were there to greet me, cheering loudly with a bottle of champagne! It was an amazing experince but not without its scary moments as I found myself battling with the busy shipping lanes and a large freighter!

As I write this I have raised about £3500 and am over the moon that I have something to show just how grateful I am to STARS for supporting Kellie.

Christopher Shepheard-Walwyn Dorset

And we here at STARS are speechless at Chris’ amazing feat….thank you!!!!!!!!!

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Postponed NHS Appointments (and how to deal with them) sound and a pacemaker was not needed.

Most of us know the feeling of dejection when that envelope comes through the door postponing our long awaited consultant’s appointment yet again. Since completing my tests in October 2007 as to why I faint in restaurants and on long haul flights, I only received the outcome on Monday 2nd June 2008.

told there is no mention of an ECG on the screen!

(At this point we are speechless!)

what seems like trivial fainting to the NHS is serious to you and me

I was given a follow-up appointment for 14th January 2008 but on 17th October 2007 a letter arrived postponing this appointment to 3rd April 2008 (due to unforeseen circumstances!!). On the 28th March, yet another letter arrived telling me that this April 2008 was again cancelled and I would be given a fresh date within a month.

I emailed the Appointments Office of the hospital and let them know in no uncertain terms that I was not best pleased!!

A few weeks later a letter arrives dated 16th April with an appointment for 2nd June but, on 19th May (you’ve guessed it!), I’m told the appointment is cancelled. Again I see red!!

Over the last few years my fainting episodes had increased. Doing my own research on the web, I found these could be due to a heavy meal, sitting at the table for a long time or on long haul flights.

The last time en route for Australia (2005) I passed out, having dozed off after the late meal and was sick and incontinent.

I duly arrive at the hospital on the 2nd, my blood pressure taken, and I see the registrar, yes, that very same registrar who didn’t exist!!

He was very pleasant and said there was nothing wrong with my heart but I had vasovagal syncope and why was I on blood pressure (bp) tablets as my blood pressure was so low – 125/79 at age 68 and that I was to come off these.

The only medication for fainting he could offer (and did not really recommend) was tablets which I declined. Incidentally, the hospital put me on these blood pressure pills a couple of years ago and I had been trying to get off them ever since knowing I have low blood pressure! (We are still speechless!)

Immediately I go on-line and find the Secretary for Health’s website, phone someone I leave details of my hurt and and am given the number for my local PATIENTS’ dejection at being treated in this ADVICE AND LIASION manner by the hospital.

OFFICE. I leave details of my hurt and dejection at being Now this is off my chest so treated in this manner by the to speak, I hope any STARS hospital. A lovely lady, called member who keeps having their Linda, phones back appointments postponed, will to say the reason for take up the matter with their local May 2007 saw the the cancellation is that PATIENT ADVICE AND LIASION the consultant does SERVICE. You can find them beginning of my revolt! not have a registrar through links with the Dept of but the Appointments Supervisor Health website or via NHS May 2007 saw the beginning of would be contacting me very soon. direct. Please do not be fobbed off my revolt! I fainted badly at the what seems like trivial end of a heavy meal. I went to my Soon another letter arrives re- GP who dismissed the episode as instating my appointment to a later fainting to the NHS is serious me being “just a fainter”! I saw red time on 2nd June and advising to you and me especially if you and demanded to be referred to me I shall be having an ECG. Then are in a crowded restaurant or the local hospital. By that October I am sent another letter with the on a 747 Jumbo 30,000 feet high.

I had seen two consultants, had same date confirming the time numerous tests and on both (again) but no mention of ECG. Joyce Trueman occasions told my heart was I phone appointments and am Formby

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info@stars.org.uk

Only a Heartbeat

They say that your life can change in a heartbeat... and mine did.

First, a little about me: in the summer of 2007 I was 53 years old, single and self-employed. On a hot day in August, I woke to find myself on park bench fighting off the remnants of a terrifying nightmare and wondering what I was doing there.

Gradually I was able to identify the face of the man, peering at me with great anxiety, as someone I knew.

that there was no brain tumour (I had had cancer previously), the despondency when the scan for epilepsy showed some suspicious result, the frustration when the Echo Scan and ECGs, showed no abnormality that would account for me losing consciousness. Meanwhile the faints were becoming more frequent, as were my stays in hospital. My world shrank from a busy, varied freedom to one of confinement and fear – not able to shower or cook without supervision - anxious at night in case I had to brave the stairs to get to the bathroom.

By mid September I had blacked out five times; once on admission to hospital. Finally, epilepsy was ruled out after a sleep reprived

after a few chaperoned outings, even ventured out alone. 25 days later after I had managed, with a little help, my first supermarket shop for many weeks, I fainted again, trapped on the upper floor of my house alone and frightened, until I finally managed to call a friend. I experienced 2 more episodes that night and finally we called the emergency services who found nothing wrong apart from a slow pulse rate, which soon returned to normal. A & E also found nothing wrong with me, but I felt safer there than at home.

Unable to do anything more they eventually sent me home.

The future looked pretty bleak.

Another week passed, punctuated by feeling dizzy and the need to lie down frequently. I was trying The future looked pretty bleak. as best I could to lead a normal The following day my doctor listened to my story, including the Another week passed, punctuated life seeing friends and going out fact that I entered consciousness by feeling dizzy and the need to whenever I could find someone to accompany me. Some hours after screaming with fright and embarlie down frequently. a friend had brought me home rassed that I was incontinent, from an overnight stay I fainted and declared that this was a EEG. Then a 24 hour blood again. It was usual for me to simple faint. Having never fainted pressure monitor fitted which, feel cold and shaky after these before, I was reassured by this despite me feeling very faint, episodes, but my recovery time was and resumed my life as normal... recorded nothing of use. I remained getting longer and longer. I imagine for three weeks. This time I was in hospital for 6 days, feeling my friend was not best pleased in the cool of air conditioned dreadful.

During this time I to be recalled, but I was truly cinema, ironically watching Alfred underwent a tilt test and, although terrified, shivering and tearful and Hitchcock’s Vertigo. The pattern I didn’t faint, the technician felt unable to face the night alone. was similar to the last time, declared that the problem was a little warning, a terrifying descent Vasovagal Syncope (simple faint) The following day I called the into darkness, but thankfully no and failed to understand why I cardiologist who admitted me incontinence. Not knowing what was so depressed by this diagnosis again. This time there were more else to do I sat through the - she thought it was great news tests – they started to investigate remainder of the film, before asking that it wasn’t my heart – but I my endocrinology – perhaps there my friend to take my car keys already knew that. She told me was a tumour somewhere other and drive me home. that this was hardly ever fatal! She than my brain, perhaps my adrenal The GP I saw this time, referred advised me that I should drink three glands had been affected by me to a neurologist and so started litres of water a day, increase my previous chemotherapy. Was the a battery of neurological and cardi- salt intake and wear support tights. ringing in my ears significant? Not ological tests and a rollercoaster of I followed her advice, convinced according to the ENT man, who emotions. The relief of finding out myself that all would be well and also told me that his niece had

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suffered from faints throughout her life and that the tests often produced false positives, she was now 28 and had to give up her job; not exactly comforting. Another round of tilt tests and blood pressure monitoring – nothing conclusive resulted from any of these. The autonomic specialist suggested counselling and told me to go and get on with my life!

Finally I faint, lying in bed, wired up to a heart monitor, I am positively elated when I come round – at last we will get to the bottom of this.

But, no it seems the monitor wasn’t working. It is now late October – I am beside myself and frightened of leaving the comparative safety

of the hospital, but sick of the confinement.

The cardiologist agrees to insert a loop monitor in my chest and sends me home. The following day I faint again. This time I return to the hospital where the monitor is interrogated, this reveals that my heart had “paused” for 25 seconds.

A day later I am fitted with a pacemaker. When I next see my cardiologist he admits that he had begun to think that I was mad. A slightly tongue-in-cheek comment, but in the absence of a physical explanation my doctors had started to believe that I had somehow “made” these episodes occur. After all they didn’t

know me and I must certainly have presented as an anxious and somewhat depressed patient.

He now uses my case as lecture material and I suspect that there will be a few more loop monitors in use as a result.

My life has returned to something closely resembling normality.

I have regular checks at the pacemaker clinic and so far all is going well.

Apart from the fact that I will never be able to follow a career as an arc welder (the equipment interferes with pacemaker functions) which I think I can live with, I am once again free to live my independent life.

Rachael Block London

r a e b a e Support STARS! Giv 01789 450564

www.stars.org.uk 11

dl i yh m a f om e and help

lie s a c r o s s t h e U K

People of all ages can suffer from blackouts, www.stars.org.uk or syncope (the medical www.stars-us.org term) often caused www.education.stars.org.uk by a heart rhythm disorder. Doctors +44(0) 1789 450564 suggest that more than info@stars.org.uk 225 000 young Syncope Trust people have P O Box 175 experienced Stratford Upon Avon unexplained Warwickshire CV37 8YD loss of UK consciousness, Registered Charity No. 1084898 ©2008 and can face problems Working with education, together with individuals, families and work, driving and medical professionals to offer even following a ‘normal’ daily routine. support and information Most worrying is that syncope can be a on Syncope and warning sign for a serious, possibly Reflex Anoxic Seizures fatal heart condition.

n e i r f a

info@stars.org.uk

Life moves on a pace for Christie…..

I collapsed I would ruin their day or night. I also hated the attention an attack would bring: people would stare and whisper and it really affected my confidence. On more than one occasion people thought I was collapsing due to a drug overdose. This was extremely upsetting and sometimes stopped people from wanting to help.

My name is Christie Hamilton and I am 23 years old. When I was 19, I was diagnosed with Neurocardiogenic Syncope.

My Mum and I went back to the doctors, and this time we decided we were not going to leave until something was done.

I was referred to a hospital in Gloucestershire where I was investigated for epilepsy. I was told that I didn’t have epilepsy and I was referred on to another hospital. On my first appointment I had a chat with the specialist and he explained that at my next appointment they would carry out a few tests.

70° and the nurse explained that the test should last 25- 40 minutes and I was to stay still and not talk.

After 5 minutes I started to feel palpitations in my chest, my temperature went sky-high and I felt very nauseous and close to losing consciousness. The nurses looked very concerned and quickly put the table back to the lying position. I was given time to recover and then the doctor came to see me.

He explained that it was quite worrying that I hadn’t lasted very long on the tilting table test, and that I had Neurocardiogenic Syncope.

After asking him to say it again and again I finally grasped how to say the name of the condition!

Part of me felt upset because it confirmed that there really was something wrong with me – but part was just relieved that my condition had a name and could hopefully be treated.

I had suffered with blackouts (loss of consciousness) for years, but when I hit 17 the blackouts seemed to become more frequent and more severe.

Sometimes I would lose consciousness for long periods of time and on other That was only the I decided to change occasions I would beginning: there was still a regain consciousness consultants to get a second opinion as I long way to go. The next as soon as I made didn’t feel that the medical professionals stage was to try and find contact with the ground. medication and a dosage Apart from standing I was seeing really understood how much that would be suitable for long periods of it was affecting my life and my well-being. for me and would stop time, I was not aware the syncope attacks of any possible triggers. (blackouts).

In my teens I was told by my GP This next appointment was quite that I was just prone to fainting frightening, as I didn’t know what to At first I was given some and was often asked if I was expect. I was told that I would be medication to take, which is a eating enough or not sleeping taking the ‘tilting table test’. I beta-blocker. I began to find properly. As time went by my walked into a small room that it hard to breathe and I was blackouts became more and more housed a bed and a few machines. becoming very ‘wheezy’ so frequent and I would collapse I was told to lie on the bed and a I went back to the specialist numerous times a day. It was very nurse connected me to an ECG who stopped these tablets and frustrating and I often had minor machine. Then I was strapped then prescribed Fludrocortisone. down by my legs, waist and arms. There was no difference in my injuries from falling.

The bed was then tilted to about condition, so over the few As you can probably imagine, my whole life was starting to be affected. I couldn’t keep a job, because my condition was not diagnosed so it was hard to Did you know that, according to a survey conducted by the Medical convince employers that I was Defence Union, fainting is the most common condition for a doctor absent from work legitimately. to stop and help with. 44% of GPs questioned and 41% of hospital I was very unsure about going out with my friends, because if doctors had acted as a good samaritan on a number of occasions.

Reassuring…………?

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info@stars.org.uk

months my dosage was increased gradually until it couldn’t be increased any more.

opinion this wasn’t good enough.

Last year (2007) I experienced a severe blackout and was taken When I was taking the maximum to hospital. A week later I had dosage I began to see a slight an appointment with my new difference.

My attacks had consultant who couldn’t believe become less frequent, although how long I had suffered and the I was still collapsing on average severity of the blackouts. He 3-4 times a week. I was then told also took into account how I had, had to change my It actually terrified me, as far as lifestyle and wasn’t bubbly, outgoing I was aware it was only old people the person I was before.

I was very that had pacemakers. depressed. to decrease the dosage of the Fludrocortisone and start taking Fluoxetine. As my blackouts were becoming less frequent I started to work again, although only parttime as it seemed my body couldn’t cope with the pressure of full-time work.

That’s when I was first told about the possibility of having a pacemaker fitted. I must admit hearing ‘pacemaker’ didn’t make me jump for joy. It actually terrified me, as far as I was aware it was only old people that had pacemakers.

Over a year or so, the dosage of both medications increased and decreased. I was still having quite bad attacks and was told to start taking Slozem capsules as well!

Taking all the medication was really getting me down as I was taking up to 4 tablets a day.

I didn’t feel that the Slozem capsules were making a difference to the frequency of my attacks so I stopped taking them.

My consultant explained the pros and cons of the operation, which confused me even more. I was told that there was a chance the pacemaker wouldn’t work because I have low blood pressure: the pacemaker wouldn’t change that, which meant I could still black out.

I carried out some research on the internet and found that there were so many people whose blackouts had stopped after the operation – however, I also found that some people had to have the pacemaker taken back out again as it didn’t work or the body rejected it!

I decided to change consultants to get a second opinion as I didn’t feel that the medical professionals I was seeing really understood how much it was affecting my life and my well-being. Yes, my blackouts were not as frequent but I was still having them, and in my

Taking everything into account, I decided to go for the operation.

I didn’t want to have syncope running my life forever. I didn’t

feel in control any more and it was putting a strain on my relationship, social life and work.

Six weeks after consulting my doctor about my decision, I was at the hospital waiting to go down to surgery. I have never felt so scared, but the nurses, doctors and surgeon were all so nice and reassuring.

After 3 hours, I was out of surgery.

My operation took slightly longer than normal as there were a few complications: my veins are very small which made it harder to direct the pacemaker wires through.

After surgery I was in quite a lot of pain and the pacemaker kept pulsing (this is what happens when your heart rate drops and the pacemaker regulates it again) which was very strange. The next day I was able to leave hospital but I was told not to lift my arm for 6 weeks as the wound needed to heal on the outside and inside.

Over the next few weeks the pain started to fade and I began to feel more comfortable when my pacemaker started to pulse.

Three months on, I’ve had my all-clear from the hospital, I’m back at work (working full-time) and I haven’t had any blackouts or symptoms. I feel that I have finally got my life back and I can do normal things without worrying about blacking out.

Christie Hamilton Bristol

The Nintendo Wii and Pacemakers We often receive enquiries regarding the use of mobile telephones and pacemaker and the latest has been the use of the Nintendo Wii. Following investigation, we can report the following…

“The advice received from the device manufacturing companies is that patients with pacemakers are OK to use Wii but are advised to keep the pacemaker nine inches away from the radio source.”

We hope this will allay any concerns some of our members may have.

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info@stars.org.uk

Jenni Cozon

Trudie, Charlotte and Francesca would like to thank all those who attended the funeral, sent flowers, cards and messages.

This is the thought that we must all hold close to our hearts – Charles is not suffering, he is at peace. We all miss him so.

To conclude, Prof John Stephenson, upon hearing of Charles death, and whom she called when Charles died, said “From everything I know, when the heart stops as Charles’ did, his experience would be of the greatest wonder of heavenly beauty, of uplifting light – of course we cannot know what happens then, but my guess is that this ecstasy seems to last for ever.”

At the service to celebrate Charles’ life there were hundreds of friends and colleagues from all areas of his life which demonstrated how much Charles meant to so many. Trudie went up to one doctor and thanked him for attending and he replied “I came for Charles, we all have so much respect and admiration for him.”

Charles could be a hard taskmaster and was a stickler for detail (goes back to his banking days no doubt!) but he was always willing to help anyone who asked. He got on with whatever was thrown at him (literally sometimes!) and did everything to the best of his capability.

He was always smiling and very placid. He was a pro at appearing to agree with you, and then just doing what HE thought was best! Something Trudie experienced on quite a few occasions!

I don’t think either Trudie or Charles had any idea of ‘the monster’ they were creating – reaching out worldwide, the birth of STARS US – but neither he nor Trudie had any regrets, though their family time was affected. Charles enjoyed the work very much and was always so pleased to see the difference the Charity was making to so many lives. Trudie established STARS at the request of Prof John B. P. Stephenson when Francesca was diagnosed with RAS at 3 years old.

This ‘Superman’ label stayed with him! When Charles reached 50 and after 27 years at Lloyds Bank, he decided it was time to ‘retire’ – however he found himself working harder after retiring than ever before! He began helping Trudie fill time with STARS, which had been established some years before and run from home, and he was soon working full-time. Five years ago when Trudie launched Arrhythmia Alliance he was by her side and as a volunteer he gave his time 24/7, 52 weeks of the year, never complaining. The busier STARS was the more Trudie and all of us relied on Charles.

I first met Charles when Trudie and I were pregnant at the same time with our eldest children. Along with my husband he was being ‘encouraged’ (how Trudie does!) to attend anti-natal classes so he could be useful during the birth! From the day Charlotte was born, Charles was always there for Trudie. Without his support over the years Trudie would not have been able to get through the challenges they have faced together. Trudie was the envy of all our girlfriends who had young children because she just had to pick up the phone if there was an emergency and Charles arrived – just like Superman.

Charles’ career was spent in banking After leaving Aberdeen University in 1972 he stumbled on banking when he was leafing through the A-Z of careers and joined Lloyds Bank in Bristol! He married Trudie in 1984 and became one of the youngest bank managers of the time when he was promoted to Manager at Lloyds, Warwick, followed by Shipston on Stour and then Stratford upon Avon. This was the start of one of the most successful and respected husband and wife teams.

As the longest serving employee of the charity, other than Trudie of course, I have been asked to write this tribute to Charles. He was a man of many hats – husband of Trudie, father to Charlotte and Francesca, son and brother, and a dear and much respected colleague of us all here at STARS.

Sadly on 3rd April 2008 Charles Lobban died suddenly and unexpectedly at home from sudden cardiac death.

20 January 1950 – 3 April 2008

CHARLES ALEXANDER LOBBAN

Autonomic function in children The University of Nottingham is organising a research project to develop a testing procedure for children and young people who might have syncope.

If you think you might like more information about the research then contact trudie@stars.org.uk, referring to this proposed project and giving permission for us to pass your contact details to Dr Whitehouse and his team. You can also write to Trudie Lobban Founder and Chief Executive STARS PO Box 175 Stratford-upon-Avon CV37 8YD

Head-up tilt measurement

The research will form the basis of a medical student dissertation, for their BMedSci degree, and will help us try out different ways of testing autonomic function in children and young people from 6-17 years of age.

Patients from the children’s Syncope Clinic in Nottingham will be recruited to try out the procedures.

There is nothing painful (no needles) but the volunteers will have various monitors on and do various things, including lying down, standing up, lying on a tilt table, which after 15 minutes is tilted head-up etc. The whole thing might take a couple of hours, and will be repeated the next day, to see how reliable the results are!

At this stage we want to try the tests out on people we know have neurally mediated syncope, ideally those who have already had a “positive” Head Up Tilt (HUT) test. But anyone who has had their usual symptoms triggered by HUT testing would be good for the project.

We have Research Ethics Committee approval and support from the University of Nottingham, and the project will start in October 2008.

Heat rate ECG measurement

send you information sheets for parents / guardians, teenagers, as well as for younger children.

If you think you might want to help or would like to know more, then you can contact Dr Whitehouse through STARS (see above). To be included you could be referred to the children’s Syncope Clinic by your doctor, then we could review your condition and explain more about he project before fixing the dates for the testing. We could also see you after to go over the results and for you to tell us what you thought of it all.

We can send you more details. If you like, we can

01789 450564

Dr William Whitehouse Clinical Senior Lecturer in Paediatric Neurology University of Nottingham Jenni Sanders Medical Student University of Nottingham

www.stars.org.uk 16

info@stars.org.uk

All in a day’s work for STARS Friday 13th June, what a day – from a balloon launch in the morning to a Grand Charity Dinner and Dance in aid of STARS in the evening!

Following a wonderful morning releasing 200 balloons for STARS, I went off to complete the final preparations with our co-organisers Mr Darren and Mrs Tracey Kelly for the dinner and dance.

We had more balloons to inflate; the raffle and auction prizes to organise - of which there were many which had all been very kindly donated by local businesses and friends; and then of course the venue!

The dinner dance was to be held in Jocastas in Lincoln, which offers a marquee. By 6pm tables were set and candles lit ready for the event to start at 7.00pm.

Within just thirty minutes everyone was present and ready to eat! We had chosen the ‘hog roast’ followed by a choice of several desserts.

STARS Patron William Whitehouse with Bridgette

Throughout the evening there was entertainment, first from a band called ‘The Infidels’ during which Jack (my youngest) danced by himself on the dance floor to the delight of everyone! After this we held the raffle and auction and to our delight everyone present was so generous! We had been donated prizes such as vouchers for £250.00 from a local PVC company; tickets for Kylie Minogue at the O2 arena; a show and 5 star hotel break in London; a day in a music studio cutting your own disc; a round of golf for 4 people at Blankley (very nice!); even a PVC front door including fitting!

Along with many other lovely gifts.

After the excitement of this the disco began, pausing from time to time for the band to hold another session; the dance floor was never empty and the evening went from

Jack with his Dad and the shirt!

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www.stars.org.uk 17

strength to strength. To top it all we had arranged for a strolling magician and he certainly kept everyone both amazed and in fits of laughter whilst relaxed at their tables.

By the end of the night everyone was thanking us for the wonderful evening and all hoped we will do it next year. It was very hard work to organise, and we did it in just 10 weeks, but the rewards, pleasure, fun and amazing fund raising for a charity so close to my heart was well worth it. Plus the knowledge that I have been instrumental in both raising funds AND raising awareness of RAS in the Lincolnshire area – YES! It was definitely worth all the hard work!

Bridgette, Paul, Craig, Karl and Jack Nottingham Lincoln STARS would like to thank Bridgette and her family and friends who all worked so hard on these two projects and raised in excess of £2700 – a truly staggering amount!

Thank you

info@stars.org.uk

Postural Tachycardia Syndrome (POTS case studies, including POTS, Pregnancy and Baby, can be viewed on STARS website http://www.stars.org.uk/html/pots.html) Since STARS was first launched some sixteen years ago, there has been a substantial increase in the understanding of illnesses that result from disturbances in the autonomic system.

Some patients are so incapacitated by their symptoms that they are often misdiagnosed as having chronic anxiety or panic disorder or, worse, being told that it is all ‘in their head’.

Many consultants were seeing patients with vasovagal syncope but some were finding that they had patients who were also presenting with postural tachycardia (a very fast heart rate that occurs after you stand up), severe fatigue and exercise intolerance.

What are the symptoms of POTS?

These people were told they were suffering with POTS.

What is POTS? POTS is a chronic condition which can vary in degrees of severity on a daily basis. Some days, a patient with severe symptoms will have to lie down for the whole day, unable to function. Many patients find themselves initially house-bound due to the symptoms.

There are severe, moderate and mild cases of POTS. No two patients are the same and no two cases respond to treatment the same.

A common feature is the inability to stand up from a sitting or lying position without experiencing symptoms (orthostatic intolerance).

Complaints of tachycardia, migraines, palpitations, tremor, nausea and insomnia are mentioned time and time again.

Some also experience syncopal attacks.

At times sufferers can be severely limited as to what they can do. Housework, showering and even eating can exacerbate these symptoms. Many patients find menstruation and exposure to heat and humidity an aggravating factor.

01789 450564

The main symptoms of POTS can include: • • • • • • • •

Chronic dizziness Light headedness Severe unrelenting fatigue Migraine Insomnia Palpitations Blurred vision Weakness

However, some patients will also complain of: • • • • •

Anxiety Loss of concentration Shortness of breath Coldness of legs and fingers Body temperature regulation issues • Hyperventilation or very fast breathing that can result in loss of blood pressure and fainting

Who suffers with POTS? Most sufferers of POTS are between 15 and 50 years of age, but it can strike at any time.

Research has shown that approximately five times more females are affected by POTS than males, and, sadly, some sufferers wait a year before plucking up the courage to talk to their doctor – afraid they will be thought to be making a fuss. Developmental POTS affects adolescents.

Often beginning around age 14, peaking at 16, then slowly fading in young adulthood. It can occur typically after the onset of puberty and sometimes following a period of rapid growth. Patients

www.stars.org.uk 18

can suddenly develop symptoms following a viral infection or severe shock. Some autonomic specialists believe that there may be an overlap between people with POTS and some individuals suffering from chronic fatigue syndrome.

What help is there?

Some sufferers become debilitated and find it impossible to continue working or struggle to attend school on a regular basis. This can cause depression and it is essential that they have the support and understanding of their doctor.

Cognitive Behaviour Therapy (CBT) has proved to be very successful in helping a patient come to terms with this often overwhelming condition and to help them manage their lives.

Some specialists do prescribe medication and in previous issues of the STARS newsletter members have talked about Midodrine helping them lead a more normal life.

Researchers are attempting to identify and treat the causes of POTS. Studies are showing that patients will eventually suffer fewer symptoms, less frequently.

It needs to be recognized that POTS can be quite disabling for the patient and very stressful for their family. There is no one treatment for everyone and sometimes it is a case of trial and error, but patients should never lose hope - hope is a powerful medicine that should be nurtured.

STARS thanks Blair P Grubb, MD, Cardiology, Medical University of Ohio for his support by providing information for this article.

We also acknowledge the work and advice of Debra Dominelli; www.dynakids.org

info@stars.org.uk

NEW SCHOOL TERM ORDER YOUR PACK NOW! STARS Syncope and RAS Alert Cards are now available in packs of twenty, at the low price of just £1.00 es

Seizur ex anoxic medical st And Refl milies and Syncope Tru ividuals, fa on ther with ind pport and information ge to g kin su “wor res” ls to offer oxic seizu an professiona ex fl re d syncope an

450564 4 (0)1789 Admin: +4 8 6362 02 00 e: 08 Freephon g.uk @stars.or Email: info uk stars.org.

Web: www.

NAME:

I suffer wi

th Reflex An (this is not con oxic Seizu nected to epi res lepsy and is NOT life thre Please make atening) sure I am saf e Please put me in the recove ry position Please talk qui etly to me and wait for me to regain con sciousness (no rmally only 1 or 2 mins) CALL IMM EDIATELY:

If injured or

concerned

also call for

EMERGENC

Y SERVICES

- 999

They are popular with all ages because of the simple manner in which they inform and protect.

Just the size of a credit card, the STARS Alert Cards provide key information for new carers, work colleagues, family friends, schools and the general public and so help YOU!

To order, contact either jenni@stars.org.uk or jo@stars.org.uk

SHINE A LIGHT ON EDUCATION Online information, downloadable lesson plans, sample care plans and support materials designed for educators and families managing the care and education of young people with syncope.

So whether you are a teacher supporting a child with syncope or RAS, a pupil wondering how to tell your friends or you simply want to talk to others, why not visit;

www.education.stars.org.uk

Feeling Faint but nowhere to sit?

STARS SYNCOPE MESSAGE BOARD We have recently had our attention drawn to a number of unsettling postings on the STARS syncope message board. We had opened up the board in good faith to welcome more members to share their experiences but obviously this was not successful.

Please rest assured that the board will continue to be moderated but now it will be open to STARS subscribers only. We will continue to offer help and advice to all our members but those of you who choose to become a subscriber will have access through a password to the Subscribers only area on the website and will also be able to download our leaflets whenever they are needed. Back copies of the newsletter will also be available to view.

01789 450564

Cross your legs, put one ankle over the other, then tense the muscles of your hips, thigh and bottom. Fainting occurs when blood flows from your brain and into your legs. “This move relocates pooled venous blood back from the region under the diaphram to the chest” says STARS Patron, Dr Wouter Wieling, from Amsterdam’s Academic Medical Centre. “The heart can then pump the blood more readily to your brain staving off the fainting feeling - at least until you can find somewhere to sit down and recover.”

www.stars.org.uk 19

info@stars.org.uk

STARS Flies High To Raise Awareness!

Using biodegradable balloons and tickets, STARS members shone as they helped to sell and launch over 3000 balloons across the UK during this year’s Arrhythmia Alliance Awareness Week, which ran from 9th – 15th June 2008.

From Scotland to Poole, Kent to Northern Ireland then Lincoln through to The Midlands and Bristol, STARS balloons fluttered into the skies.

The event was launched to raise awareness of Syncope, Reflex Anoxic Seizures and Vasovagal Syncope, but in fact was so successful it has also raised almost £1000 for STARS.

Local Events Courtesy Stratford Herald

Stanton Drew Primary School

Prontaprint

Ilmington C of E Primary School

Stanton Drew Primary School was one of the first schools to ask if they could release some balloons for STARS. As it is Jo Jerrome’s local school she went along and joined in the fun too!

She would love to be invited back next year for 2009 launch!

Prontaprint, our printers rounded off a fantastic week, with a launch from their offices in Stratford upon Avon.

Many thanks go to Alex Graham and his team.

Present in the photo is Trudie Lobban, Laura Nelson, Simon Woodings and Alex Graham.

The children of Ilmington C of E Primary School hosted one of the first launches of AAA Week. As an award winning ecofriendly school, they were delighted to help as all the balloons were biodegradable. It is our AAAW Co-ordinator, Laura Nelson’s local school and she is pictured with the children.

NEWS FLASH .....

Winners of STARS Great Ballon race have just been released:Many travelled hundreds of miles, being found across the UK and into France, Belgium, Denmark and Germany! Even more amazing the winning balloon travelled over 700 miles!

So, well done to the first prize winner James

Adams

Hansen Amnkadhklein of Germany found the winning ticket.

Almost 3000 balloons were sold during this awareness raising event, so many STARS members joined in, with quite a number selling well into the hundreds!

However, the first prize to the member who sold the most balloon tickets goes to

Catherine Reid from Northern Ireland!

Well done to Catherine, and thank you to everyone who helped make this such a success!

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info@stars.org.uk

Thank you…..STARS Although it has not been long since our last newsletter landed on your door mats, you have all been so busy raising funds and increasing awareness that there are many of you to say thank you to.

STARS Balloon Race supporting AAAW ‘08 This event caught the imagination of everyone. The collage of photographs on the front page tells the story!

Thousands of red and white balloons filled the skies during the second week of June. Many of our members supported us by selling the balloons but we must say an extra special thank you to the following who held parties, entertained the press, and persuaded their local school to join in the fun (the children loved it!).

We still have more of you to thank, however!

You are all full of such good ideas to raise money.

We are also aware that there are lots more people who have forgotten to send us a photograph and a few lines on how they have been fundraising for STARS - we would love to hear from you in time for the next edition!

•

Christian Burge who chose to run the Jurassic Ultra Marathon, 78.6 miles over 3 days.

•

Debbie Castley who ran for ‘her boys’ and raised over £500.

•

Pat Bennett who keeps a collection box in her house for visitors.

•

Stanton Drew Primary School

•

Bridgette Nottingham and Meadows Primary School

•

Margaret Adams raised nearly £300 running a 10k marathon.

•

Cathrine Reid

•

Rachel Sealey has raised over £100 giving facials and selling bracelets.

•

Julie Fear

•

•

Prontaprint

Robert & Jane Naylor for raising the profile of STARS at the Rutland Agricultural Show in June and nominating STARS as their chosen charity for a Golf Day.

• •

Jane, David and Jennifer Mackay with huge support from North Lanarkshire Shopmobilit and Hunters Quay Caravan Site

•

Ilmington C of E Primary School

George Stephenson High School at Killingworth, North Tyneside who chose STARS as their designated charity and ran a Euro 2008 Fantasy Football competition as one of the events. Lots of fun was had judging from the comments on their Just Giving Page.

•

Daniel Ambler who raised in excess of £600 by walking the Leeds Liverpool Canal in its entirety – a mere 127.25 miles – in 4 days! When he finished besides, thank you, all he could say was ‘my feet hurt, my legs hurt, in fact most of my body hurts!

•

Naomi Fear and Royal Manor Arts College of Portland, Dorset who had a non-uniform day and raised hundreds of pounds for three charities, one of which was STARS!

•

And to our ‘Centurian Champions’, Kate Smith, Nikki Gill Jenny Bull and Joan and Rocco Laamaim, who each sold hundreds of balloons

Thank you from all of us to all of you who have spent so much energy, enthusiasm and time raising money in order that we can continue to support the sufferers of RAS and syncope and their carers.

STARS Conference 2008 2008 Don’t forget to register for the STARS Conference and Regional Meeting.

For more information visit www.stars.org.uk

(843) 785-4101 01789 450564

www.stars.org.uk 21

rsmith@stars-us.org info@stars.org.uk

COMING SOON!!!!!!!!!!

STARS new and improved website will be LIVE in August.

This website has been designed to better serve you. Once up we would love your feedback.

Feel free to send comments and ideas to Rebecca Smith rsmith@stars-us.org We will notify all of you when it’s LIVE.

STARS Donation Card P.O. Box 5507, Hilton Head, SC 29938 Name: _________________________________________________________________________________________________________________ Address:

______________________________________________________________________________________________________________

CITY: _____________________________ Telephone:

ST:

_____________________________________

_______________________________________________

E-mail:

ZIP:

__________________________________

___________________________________________________

My Donation to STARS Please charge my gift in the amount of: I wish to pay by using

$25

Mastercard

$50

$100

Visa

$250

$500

Amex

Card Number

other

_____________

Other __________________

Expiry Date

3 digit security code

Please find my enclosed check in the amount of $ I would like information on volunteering for STARS Signature

I would like to host an event for STARS

Date

You may be eligible for a matching gift to STARS. Ask your employer if they offer a Matching Gift Program.

www.stars-us.org www.stars.org.uk

(843) 785-4101

rsmith@stars-us.org

7

STARS educational materials available for distribution To educate and increase awareness of Syncope conditions, STARS literature is available to distribute to doctors offices, hospitals, schools, friends and family.

LITERATURE AVAILABLE STARS Awareness Poster Blackout Checklist

S STAR

STARS

als ssion al profe d medic nditions. co lies an , fami Syncope duals on indivi ormation with gether ort and inf ing to supp Work

er to off

ic Anox Reflexizures Se

Working together with individuals, families and medical professionals to offer support and information on Syncope conditions.

Syncope

STARS Brochure

STAR S

Do you or suffer from fasomeone you know inting or bla ckouts?

STARS

Working tog ether with individuals, profession families and als to offer medical support and information on Syncope conditions

Working tog eth to offer er with ind ividu support and inf als, familie s ormat ion on and medical Syncop pr e cond ofessionals itions .

STARS offe rs:

■

Information Helpful Pub and Reports lications: ■ Toll-free helpline ■ Syncope: Types, Caus ■ Youth es, Helpline Treatments and More ■ Newslette ■ Reflex rs Anoxic Seizu ■ Monthly res ■ Blackouts e-bulletin Chec klist ■ Vasovagal information Sync and a moderate message boar (Neurocardiogeope d d on www.stars nic Syncope) -us.org All of STAR Expert approved by S’ literature has been internationaa panel of National and l medical expert International s. meetings

Vaso v a g a l Synco pe

■ Timely ■ Ask the

(Neuro cardio ge n ic Synco pe, Refl ex Syn cope)

■ Regional,

DID YOU KN OW?

■ It is estima ted that loss of consciousn 50% of the ess will affect population up to at some stage in their life.

Syncope is the most comm on cause of consciousn loss of ess.

■

■ Synco pal episodes account for 3% of hospi 6% of ER visits tal admis and sions up to in the U.S. Due to a simila rity in symp toms, synco misdiagnos pe ed as epilep sy. 30% of adults can often be children are and 39% of misdiagnos ed with epilep are actually sy, many of suffering with whom syncope.

■

Reflex Anoxic Seizures .org s-us .star www

www.stars-us.org

www .stars -us.o rg

www.stars-us .org

Syncope

(843) 785-41 01

Vasovagal Syncope

Improving Syncope Suppport and Education in Communities Across the Country How can we improve support within your community for individuals who suffer from Syncope?

STARS, with the support of it’s ‘advocates’ has recently engaged in a special project.

This project involves developing new community relationships as well as offering educational workshops to community professionals, and Syncope sufferers throughout the United States.

STARS important educational information is being dispersed to hospitals, the medical community throughout the nation. Syncope Awareness Days are being planned with the goal to bring medical professionals, sufferers and their families together to educate and offer support and guidance.

If you are interested in distributing STARS educational material or if you would like to see a Syncope Awareness Day in your area please call Rebecca Smith, (843) 785-4101 email - rsmith@stars-us.org www.stars-us.org www.stars.org.uk

(843) 785-4101

rsmith@stars-us.org

6

A family’s experience with Reflex Anoxic Seizures (RAS) The paramedics arrived and they whisked us away to the ER. By the time we got there, he was fine. We stayed at the hospital for a long time, while they ran different tests and completed a CAT scan. The whole time we were there, I was ok. I kept my fear in check. I thought I was ready for any diagnosis they could throw at me, until a nurse came over with discharge papers because “there was nothing wrong with him.”

My name is Adrian and I’m the mother of a now almost six year old boy who had his first episode at 15 months. He was following his cousin down the hall when fell down. He didn’t get up and started to writhe on the floor. He turned purple and then blue. He wasn’t breathing and he passed out. I called 911 and got ready to try baby CPR. I was so scared! He woke up but was very disorientated. He was crying for me and even though I was right there next to him, saying his name and trying to calm him, he didn’t seem to recognize me.

That’s when I lost it. My baby had stopped breathing! He had a grand-mal seizure! How could there be nothing wrong? They recommended I make a follow up appointment with his pediatrician and sent us home.

The pediatrician was concerned, and sent us to a pediatric neurologist, who did some studies and ran some tests and finally gave the diagnosis of Reflex Anoxic Seizure. I had never heard of it. The doctor sent us home with some materials and the assurance he’d “grow out of it.”

Over the next couple of months, he had several episodes that ended in a seizure.

I didn’t understand them and looking back, didn’t handle them right.

I thought it was behavioral, didn’t recognize the triggers, and got more and more scared as the only answer I could get was “he’ll outgrow it.”

Finally, I turned to the internet, and found STARS. STARS was the only group committed to advancing research into this disorder, and after a few emails with Trudie I began to get a better understanding of what was going on with my son.

My son will be 6 this September and hasn’t has an episode since May ‘07. I think that he finally has “outgrown it”. I am very grateful to STARS and especially to Trudie, because if it wasn’t for this organization there would have been nowhere to turn for support and information.

I am very glad that there is now a US chapter and I hope that more will be found out about RAS and other types of Syncope.

Introduction of new board members STARS would like to introduce our new Board Members

Director SAFE Laboratory (Syncope and Falls in the Elderly) Boston, Massachusetts

University of Michigan Ann Arbor, Michigan

Vera Novak, M.D., Phd

Cindy Tobin, RN, MSN, NP-BC

(843) 785-4101

www.stars-us.org www.stars.org.uk

Fetnat Fouad Tarazi, M.D., Phd Cleveland Clinic/ Syncope Clinic Cleveland, Ohio

rsmith@stars-us.org

5

A Night for STARS To Benefit STARS-US October of 2003. It is a life altering

the posh and popular SAS Martini

Seizures, a form of Syncope, since

items, all to benefit STARS-US.

- ‘A Night for STARS’, hosted by

silent auction to include luxury

Hollywood, Florida, June 10th, 2008

with STARS is a very personal one.

Guest enjoyed live music and a

event chair stated; “My involvement

Special ‘Star Martinis’ were served.

Dawn Holt, a STARS advocate and

Bar, was an evening to remember.

“I’ve suffered from Reflex Anoxic

medical condition with no cure.

RAS affects not just the individual but also their family and friends.

Unfortunately, not many Doctors or medical professionals know how to treat this or even diagnose these conditions. That is why I wanted to plan and host this event.

It has brought awareness of this condition to those who otherwise had no idea what Syncope is. I hope

others

example

and

will host

follow an

my event

in their town. It is so important to increase awareness and if we are able to educate one or two people it is all worth it.”

We at STARS would like to thank Dawn and her committee for all of Event Committee - Kristi Huddleston, Melyssa Bernstein, Dawn Holt, Carrie Jean Weekly.

The Party

(843) 785-4101

their hard work and diligence in planning this successful event!!!!!

Silent Auction Table

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rsmith@stars-us.org

4

A STARS Reunion

Peanut and Suzanne

Juanita and Peanut

Suzanne, Juanita, and “Peanut” met for lunch and began the STARS “family” bond up close and personal. Juanita said, “It was as though I had known Suzanne forever, as if we were family that hadn’t seen each other in years”.

Well, a few of these “family members” had a reunion!!!

Many Syncope sufferers and their family members enjoy the online message board.

They get to know each other, help each other through tough times… they become family.

To participate in the online message board visit our website, www.stars-us.org If you and your child would like to participate in the youth message board visit, www.education.stars.org.uk

Happy Birthday Kelsea We would like to wish Kelsea Davis a Happy Birthday and to thank her for her unselfish act. Instead of birthday gifts she wanted her friends and family to donate to STARS.

Kelsea you are truly a special young lady!!!!!

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(843) 785-4101

rsmith@stars-us.org

3

Christine’s Story questions which I could not answer. Finally, the Doctors told me I had fainted and suffered a concussion. I went home later that day and assumed that the faint was due to stress from work and the wedding.

The summer of 2004 was supposed to be a time for me to celebrate. I had a great job that I loved and I was getting married in September.

I felt like I had everything and was so happy, until one day my life completely changed forever.

In July 2004, I woke up one day and started on my daily routines. I was going down some stairs, and that’s the last thing I remember. I had fainted and when I woke up I had my mom by my side with the most panicked look I have ever seen and will never forget.

I remember being in an ambulance, strapped down and my neck restrained by a plastic brace.

Everything was spinning and I felt so sick. I was rushed into the ER and was asked a slew of

Over the next few days I continued to faint with no warning signs.

I was getting injured each time.

I finally told my parents that I needed to see my regular physician.

I explained to my doctor what was happening and she said it was just stress and I should see a psychiatrist. I was so mad because I could sense that it was not just stress and I wanted her to take me more seriously.

I saw a neurologist who ran some of his own tests and realized that this was out of his field. So then I went to see a cardiologist and I was diagnosed as having Vasovagel Syncope, (VVS). The problem was that he wasn’t sure what was causing it. I went through a slew of tests; the tilt table test, wearing holter monitors, having EKG’s, EEG’s. The tilt table test showed that when I fainted my heart rate did decrease a little as well as my blood pressure, but he still wasn’t sure why this would cause me to faint, since these were not extreme drops.

may be no help for me. I was wondering if it was “all in my head.” My life seemed to be doomed, not being able to drive, not being able to work and being injured during the ‘episodes’. At this point I was fainting almost four times a week. I have suffered so many concussions and broken bones, that now I never go to the hospital because I know the treatment for each injury.

Finally my Cardiologist sent me to see an Electrophysiologist in Ohio who has been my saving grace! He diagnosed me with a condition called Postural Othostatic Tachycardia.

I am taking medication to help raise my blood pressure and I also have a Biotronik Cylos Pacemaker.

I am still fainting, but I know one day I will get better. It helps to know that I am finally on the right track.

One thing I learned from my experience in dealing with Syncope is to NEVER give up! Fight for your health, and make sure you feel confident in your Doctor.

I am so thankful to the people at Stars for making Syncope known to the public and to help those who are suffering.

At this point I was getting very depressed and scared that there

Christine Warwick, Rhode Island

MAKE A DIFFERENCE CHOOSE STARS AS YOUR CAUSE Causes

On Facebook and My Space!

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(843) 785-4101

Causes

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2

SEPTEMBER 2008 ISSUE 2 WORKING TOGETHER WITH INDIVIDUALS, FAMILIES AND MEDICAL PROFESSIONALS TO OFFER SUPPORT AND INFORMATION ON SYNCOPE AND REFLEX ANOXIC SEIZURES

STARS participates as an exhibitor in the Heart Rhythm Society’s 29th Annual Scientific Sessions The Heart Rhythm Society is the international leader in science, education, and advocacy for cardiac arrhythmia professionals and patients, and the primary information resource on heart rhythm disorders. Its mission is to improve the care of patients by promoting research, education, and optimal health care policies and standards.

The Heart Rhythm Society’s Annual Scientific Sessions, is

the

most

comprehen-

sive meeting of the year for heart rhythm professionals eager to learn more about the adoption and integration of emerging science and technologies.

Thousands of Heart Rhythm Specialists

attend

this

session and STARS was an exhibitor for the three day event, connecting with specialist

and

introducing

them to STARS and our Rebecca Smith, Executive Director, STARS-US

ever so important mission.

The session was a success for STARS as we established relationships with hundreds of Heart Rhythm specialist throughout the nation. Since our return we have been busy mailing out our important educational materials to all who requested for their clinics, hospitals and private practices.

(843) 785-4101

www.stars-us.org www.stars.org.uk

rsmith@stars-us.org