STARS Issue 26, January 2007 by www.heartrhythmalliance.org

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JANUARY 2007 : ISSUE 26 WORKING TOGETHER WITH INDIVIDUALS, FAMILIES AND MEDICAL PROFESSIONALS TO OFFER SUPPORT AND INFORMATION ON SYNCOPES AND REFLEX ANOXIC SEIZURES

STARSUS LAUNCH 23RD FEBRUARY 2007 REFLEX ANOXIC SEIZURES 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 unexpected 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), 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 standstill (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.

STARS Freephone 0800 0286362 +44 1789 450564 www.stars.org.uk trudie@stars.org.uk PO Box 175, Stratford Upon Avon, Warwickshire, CV37 8YD, UK

BBC Radio 4 Appeal On Sunday 18th March 2007, Mother’s Day, our Patron, Sir Roger Moore will be broadcasting an appeal on behalf of STARS. Tune into 92-95fm at 07.55 hours and 21.26 hours and again on the following Thursday 22nd March at 15.27 hours. Please listen and encourage all your family and friends to do likewise. This is a wonderful opportunity to raise the profile of STARS and much needed funds for the charity.

Forthcoming Regional Meetings on NSF Implementation STARS members are invited to attend the following regional meetings that are being hosted by the Arrhythmia Alliance to consider the progress that has taken place since 2005 when the National Service Framework for Coronary Heart Disease – Chapter 8 was introduced to cover arrhythmias (including syncope) and sudden cardiac death. You will have a rare opportunity to meet the doctors and to participate in what promises to be lively discussions. • Midlands Stratford upon Avon Monday 19 February • South West Torquay Friday 23 February • London Reading Tuesday 6 March • North West Nantwich Friday 16 March • North Leeds Friday 23 March • South New Forest Monday 26 March • Northern Ireland Belfast Saturday 31 March • Dates for Scotland and Wales will be advised shortly For draft agenda, location and registration apply online at www.arrhythmiaalliance.org.uk, email aa@stars.org.uk, or telephone Laura Newton at 01789 450787. Registration fee is £10 and includes coffee, lunch and tea.

Professor John Stephenson, Founder and Patron of STARS is asking for your help with research... ‘Joel’s story’ on the STARS (http://www.stars.org.uk/casestudies/JoelReid.htm) website was of interest to those who study the origins of syncope in the young. We are told that Joel had his first RAS attack at five months on being lifted out of the bath. What do we know about RAS related to bathing in infancy? Do we know how many individuals with RAS had episodes apparently provoked by being (a) put in the bath (b) being in the bath (c) taken out of the bath? Detailed descriptions would be interesting. Does anyone have any stories about other unusual bath-time episodes? Please email trudie@stars.org.uk, telephone 01789 450564 or write to STARS PO Box 175, Stratford Upon Avon, Warwickshire, CV37 8YD, UK.

STARS CONFERENCE Wednesday 31 October 2007 at the Hilton Birmingham Metropole Hotel (by the NEC). Not to be missed! www.heartrhythm.org.uk

SUBSCRIPTIONS ARE DUE NOW! ONLY £15/$25/E25 Please pay today to enable us to continue our level of support for another year!

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

ARRHYTHMIA AWARENESS WEEK 2006 The Heart Rhythm Charity

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STARS

volunteers turned out in

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Arrhythmia Awareness Week began with a reception on the 11 September at the Royal College of Nursing, coinciding with the announcement by the Royal College of Nurses of the launch of the Cardiovascular Nurses Network. The Prime Minister sent his congratulations and acknowledged the amount of work the Alliance has achieved in just under three years.

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tes, mm.; Mike Ya d, AA Exec. Co bban, Chief Exec ud M e yn Ja Lo From the left: ter 8; Trudie ent, RCN; anager, Chap , Deputy Presid Programme M an an ch Bu ra N RC of STARS, Mau r ai Tom Quinn, Ch

Carole Ellis, Project and Volunteer Co-ordinator, co-ordinated nearly 170 events for the AAAW week and knows that many of you saw the displays in your local supermarket or hospital. It is essential that we continue this push for education, recognition and diagnosis, and prompt treatment of cardiac arrhythmias. This is our opportunity to promote STARS in the media and government, highlighting poor services for syncope patients nationwide.

Carole E

llis “Ge

ts with th

e Beat”

AAAW 2007 is already in the diary for 11-17 June and Carole is ready to hear from anyone who would like to become involved. Email Carole at volunteer @stars.org.uk.

STARS Volunteers “Get with the Beat!”

I think this says it all!! AAAW 2006 ran from 12-19 September and it was a resounding success. Over 250,000 leaflets, booklets and promotional items filled our village hall, where friends, STARS volunteers and in fact anyone with a day to spare were recruited to pack boxes then log the contents, and address them ready to be despatched across the UK.

ARRHYTHMIA ALLIANCE RECEPTION AT WESTMINSTER To celebrate the success of Arrhythmia Awareness Week, John Maples, MP for Stratford-upon-Avon, hosted a Parliamentary Reception at the House of Commons on Wednesday 8th November 2006.

The Heart Rhythm Charity

the knowledge and technology to identify and protect sufferers of cardiac arrhythmia, it is inexcusable that there are 100,000 deaths each year in the UK from sudden cardiac death and that between four and eight healthy children and young adults die every week from similar causes. Trudie said it is totally unacceptable that 30% of adults and 40% of children are misdiagnosed with epilepsy every year...

Invitations were extended to the numerous people who helped during the Week, and over 150 members of the Alliance, including STARS members, MPs and industry, gathered on the Terrace Marquee to listen to Rosie Winterton, Minister of State for Health It is totally Services; Mike Yates, Programme Manager unacceptable that 30% Arrhythmia and Sudden of adults and 40% of Cardiac Death, Department of Health; Richard Schilling, children are misdiagnosed Consultant Cardiologist at St Barts Hospital, London, with epilepsy every and Trudie Lobban, Chief year... Executive of STARS. In her presentation, Trudie acknowledged the truly remarkable support that had come from across the political spectrum, including the Prime Minister, and the hard work of the Department of Health through Mike Yates. Medtronic was singled out for having faith in her from the beginning. She stressed that, despite

She reminded everyone that although it was three years since the first Arrhythmia Awareness Week, it was in fact the formation of STARS in 1993 that was the true beginning, drawing attention to and demanding improved services for those experiencing unexplained loss of consciousness

STARS together with the other members of the Alliance will not stop in their mission to increase awareness, diagnosis and treatment of cardiac arrhythmias but at the same time will continue to provide support and information for all sufferers and their carers.

All speeches from the day can be viewed on the following websites under ‘Parliamentary Support’

www.arrhythmiaalliance.org.uk

From left to right:- Laura Nelson, Jenni Cozon,Trudie Lobban, Carole Ellis, Pauline Hunt, Wendy Hayward and David Carr

www.aaaw.org.uk

From left to right:- Mike Yates, Trudie Lobban, Rosie Winterton, Richard Schilling and John Maples

We received very positive feedback from everyone involved. Patients enjoyed being able to listen and to talk with MPs and doctors as well as sharing stories with other sufferers,carers and nurses.

UK Heart Rhythm Congress 2006 Report

UK Heart Rhythm Congress 2006

A Report by Andrew Fear, Trustee, STARS I was nominated by STARS to present at the Congress because of my experience in caring for my wife, daughter and father-in-law, all of whom suffer with syncope.

It was very good to be part of the team who were running the conference for the three days. There was a good cross section of doctors, nurses, representatives of industry, patients, carers and patient groups in attendance, so we had a varied range of topics to listen to. “Amazing to see what a huge

turnout from the medical profession there was for the Congress! Wonderful to know that over 800 doctors will now undersatnd more about how to diagose and treat syncopes and RAS, and appreciate the great work that STARS does” Mandy Warren (Berkshire)

There were a lot of positives that came out of this conference: one main point that came across was that professionals now regard listening to patients to be as important as getting tests and diagnoses. Patient groups like AA, STARS and SADS UK have had a huge impact on the medical profession, who are now beginning to appreciate their value.

“........We both found it very reassuring to see so many people I highlighted the point that there is still a huge take an interst in a condition that difference in the services being offered by different blights too many lives.”

hospitals, but I also stated that things are improving John & Margaret Watts (Dorset) in arrhythmia services. The audience seemed to STARS Volunteer agree strongly with “Thank you for helping these points. The conference was a very busy three me realise I’m not alone.” days for all of us helping to run it, but it would have been Kellie Maher (Hampshire) a lot harder if it hadn’t been for STARS members and doctors went the work Trudie, “...STARS away with a little more understanding of Laura and the rest of the team had put in during the each other and I believe this will help weeks leading up to it.

build better relationships in the future.” Julie Fear (Dorset)

Dates for the Diary:Heart Rhythm Congress 2007 - 29th, 30th, and 31st October www.heartrhythm.org.uk 4

CONFERENCE 2006 The 2006 STARS Conference was held at The National Motor Cycle Museum on Thursday 21 September during the UK Heart Rhythm Congress. Dr Adam Fitzpatrick, Consultant Cardiologist and Patron of STARS chaired the conference in his inimitable style. We were extremely fortunate to have some of the world’s leading medical experts in this field presenting their views and answering questions. The speakers included Prof John Morgan, Dr Paul Cooper, Prof Rose Anne Kenny, Dr Sanjiv Petkar, Prof Chris Mathias, Prof Richard Sutton and Dr Ian Maconochie. Topics included ‘Is it the heart or Is it head?’, ‘Running a Falls/Syncope Unit’, ‘Tape, Loop or Reveal?’, ‘POTS, Pacing, pills or placebo?’ and ‘Falls in children’. Trudie closed the conference with her update of STARS‘ activities and expressed her gratitude to the doctors for their support at the conference as well as throughout the year. It was a wonderful chance for those who attended to have access to the experts - an opportunity that not many people get! From the social point of view, it was an occasion to be with other families in a similar position, exchange experiences and to feel part of an exclusive group. The date for this year’s STARS conference will be Wednesday 31 October 2007 – so please put it in your diaries and register your interest NOW at www.heartrhythm.org.uk

Patient’s view.... I thought I would tell you about the wonderful three days my husband and I had when we attended the first ever Heart Rhythm Congress 2006 in Birmingham. When Trudie first had the idea of bringing together patients, doctors, nurses and industry, she thought it would be a meeting of about 150 delegates. Trudie was very wrong – over 800 people from around the world attended!! It far exceeded everybody’s expectations and it was wonderful to see such a mixed gathering of people coming together for the same reason – to provide a better service for patients suffering with arrhythmias, including syncope. On Thursday it was STARS day. In the morning the doctors presented their latest findings on syncope and discussed treatment options. It was so refreshing to meet doctors who were prepared to talk openly with patients. During the afternoon we had the opportunity to ask questions and share experiences. This was invaluable for those of us who have had a long journey to diagnosis. I felt that both STARS members and the doctors went away with a little more understanding of each other, and I believe this will help build better relationships for the future. I met new STARS members and also caught up on the progress of those whom I have known for some years. I was very proud of our younger STARS members, some of whom were finding it very hard to adjust to life with syncope. Each and every one of them was determined not to let syncope beat them and they were a real credit to the group.

Thank you STARS for a fantastic Congress and for your hard work throughout the year. Without you some of us would not have a diagnosis or have received treatment and would not now be living a fulfilled life. Thank you Julie Fear, Dorset

“Help me stay Vertical ”

was forty three, a busy wife and mother of four and worked part-time with my husband Rocco in our family restaurant. At the same time I enrolled in a night class in ‘A’ level Italian and if I passed I could go to university.

accident. I carried on, but as I got into the house to tell the tale, I felt sick. My eyes began to roll and I couldn’t speak. I could hear and see panic on my daughter’s face. After a few minutes my speech returned and the doctor decided it was probably shock.

It was a Saturday afternoon, I was busy in the kitchen - the restaurant was fully booked that evening. I remember feeling nauseous and hot and the next thing I remember was my husband on the phone saying ‘I think she’s had a stroke’. I realised I was on the floor. I tried to get up but Rocco later told me that I’d gone round in a quarter circle because my left side was paralysed. My mind was OK, I managed to see the funny side of my predicament but my voice was deep and slow and seemed to belong to someone else. I heard my youngest daughter asking what was wrong with mammy, and Rocco telling her I was tired and to let me sleep!

A few weeks later I had another episode, felt hot, sick and sweaty, and the next thing I was in a pool of blood after cutting my head in the subsequent fall. The hospital again diagnosed a TIA* and gave me an MRI – nothing to show. More tests followed but still no reason given for passing out. However, the consultant decided, that even though he did not think I had epilepsy, it would be sensible to recommence medication.

My brain felt full of clouds

I began to take Epilim and it again affected my memory and concentration. I had done well in my exams but when I read my text books the words just bounced off the page – my brain felt full of clouds. So began six years of epilepsy drugs, I got my licence back because that was the deal – no drugs, no driving

By the time the ambulance arrived I was beginning to feel better. The paramedic asked me various questions, What day is it? What year is it? Who is the prime minister? They asked if I had recently felt dizzy and I told them I had felt woozy when I lifted my head up or turned to the side and that I had suffered bouts of labyrinthitis for which I was prescribed medication.

I still had faints, not many, but we could put them down to panic, migraine or stress. Looking back I can see that they would follow a period of intense stress, say on Christmas Eve - shopping done, presents wrapped, sitting having a glass of champagne with my family when whoosh, that dreaded familiar feeling would start and I would pass out on the loo.

“Well it looks like you’ve had a TIA*”, they said and this was confirmed at the hospital when they told me it was a temporary lack of blood to the brain or a mini stroke. Oh my God this was serious! I had various scans and all was clear. The consultant concluded I had NOT had a mini stroke but in fact warning signs of epilepsy, and he said he would try me on medication. I took the ‘pills’ for a few months but I became a zombie so I stopped them after another consultant had agreed the dose was too strong. I felt better but, of course, I had lost my driving licence for a year. I started university doing a BA Honours in English Literature. My concentration and memory returned, as did my driving licence! Then disaster struck again. Whilst driving home I witnessed a minor

I began to suffer with various infections so the doctor suggested a blood test. Apparently the Epilim was affecting my white blood cells (a common side effect), so slowly, slowly I came off the medication. Life carried on until May 2005 when my sister was turning fifty and I was looking forward to her party. I was driving to the local beauty salon for the works when the dreaded hot, sick faint started. I tried to pull over, but crashed into a garden wall. The car was a

to make me shake so violently my shoes drop off. I often bite the tip of my tongue, which doctors often take as an indication of epilepsy. After a short while I am fine and wide awake. I have found that the earlier I can lie down flat with legs raised the quicker I recover, and if I am given something sweet it helps even more.

write off and I broke my breast-bone. It was a miracle I didn’t kill myself or some poor innocent person. That July, my sister was reading the Daily Mail and she came across an article by a girl who described having the same symptoms as mine, only she had been diagnosed as having vasovagal syncope; a condition that has to do with a sudden drop in blood pressure but can often be mistaken for epilepsy. She had found help and support through STARS, run by a mother whose daughter suffers from the condition. I sent an email to them that day and Trudie replied, in language that you would use with a friend. She is not medically trained but her experience in dealing with the condition and with the medical profession is immense and invaluable.

I am still in touch regularly with Trudie, Jenni and the team. They have a sister organisation called Arrhythmia Alliance (AA). The Awareness Week last September to highlight these cardiac-related conditions was so successful that one hundred and fifty members were invited to the House of Commons. I was one of them and I can still feel the excitment about the day, and remember praying ‘Please God, for this day only, help me to stay vertical, but if I do fall, let me find people kind and calm.’

I would love to be able to end my story on a positive note but it is not possible. I have had every test going; a positive tilt test, holster monitoring and the wee in a canister for a twenty-four hour test to check salt levels, to name but a few. My condition seems to be syncopal to begin with followed, by a Todd’s (one side paralysed) seizure, which continues

WELL RECEIVED

Joan Laamaim Newcastle-upon-Tyne P.S Joan’s prayer was answered and she did stay vertical! *TIA = Transient Ischemic Attack. A brief blockage of the blood supply to the brain, sometimes referred to as a ‘mini-stroke’

“Thank you so much for sending the leaflet. I have seen numerous consultants and this is the clearest and most comprehensive info I’ve come across...”

SEIZURES

’ WON T

STOP HIS FUN! There is no history of seizures in our family so when Matthew had his first episode at eight months old after bumping his head it was very upsetting. He was back to normal before the ambulance arrived - I felt really silly having wasted their time. Then he had another floppy episode that evening and an even worse one the next day, so I knew this was not just shock, like the paramedics had said, so he was rushed to the doctor. Everything happened quite quickly after that. Our doctor mentioned, ‘petit mal epilepsy‛ and referred us for an emergency appointment with a children‛s neurologist. The hospital consultant was fantastic, she listened to my story about Matthew‛s attacks and put me at ease immediately. She even said it wasn‛t epilepsy but booked Matthew in for EEG, ECG and MRI scans. The only worrying moment was when she suggested admitting him so that they could witness a seizure, but in the end this was not required as we agreed that we would video one for her the next time it happened. Two days later he had his EEG and ECG, both of which were clear, so that ruled out epilepsy and any underlying heart rhythm problem. The consultant then suggested that Matthew might have RAS and gave me a STARS leaflet to read with a number to call. I spoke to a very helpful lady at STARS who sent me lots of information and as soon as I read it I knew Matthew had RAS after learning about other people‛s experiences. At his next appointment the consultant agreed and was happy to give us a six months appointment. Matthew was diagnosed four weeks after his first attack. I found this amazing as RAS is not a well known condition and identifying it can sometimes take years. I am so grateful to the consultant who had heard of RAS, because if he had not been familiar with this we could still be waiting for a diagnosis. If it hadn‛t been for that STARS leaflet I think I would still be in the dark; the information really reassured me about the condition and knowing that there was support available. A few things that I find helpful when dealing with Matthew and his attacks.... ● Triggers ~ I have noticed that there are a few things that are likely to trigger Matthew‛s attacks. Identifying these ‛triggers‛ can help minimise and anticipate the number of seizures or predict when they are likely to happen. Examples of Matthew‘s triggers are pain, tiredness and extreme hunger Attack ~ Whilst Matthew is having one, when he is floppy and blue around the mouth, ● Attacks more for my benefit rather than his, I like to cradle and comfort him. (Whilst a child is regaining consciousness he can hear and recognise a familiar voice - Trudie) Sleep ~ after an attack all Matthew wants to do is to sleep, he is exhausted. He sleeps between ● Sleep thirty minutes and two hours. When he wakes up he is back to his normal self Matthew is a wonderful little boy who is full of beans and doesn‘t let RAS stop his fun! Michelle Denton Leicestershire

Have Midodrine ~ will travel! thought after all the time misdiagnosed then waiting for the drug etc. that I would live a life where I would not have to think twice about doing things spontaneously or be able to go clubbing with my friends. I guess I thought taking the drug would make me invincible! However, now reality has hit and I manage my life effectively as well as taking the drug – still adding salt, avoiding alcohol etc… it is amazing.”

Jenny Budden is an undergraduate at Sheffield University. Last year she travelled to India to work for a few months. She suffers with POTS and syncope and here is an extract from a letter Trudie received following her return. She hopes it will give a little hope to some of our readers who find life very difficult at times. “……This last year has been absolutely incredible from barely going anywhere on my own and fainting all the time to enjoying a much healthier life and travelling to Hong Kong, India, Greece, Germany, France, Italy, Mexico - to name but a few! I still have episodes of syncope about twice a month and pre-syncope episodes most days but compared to fainting about three times a week and feeling yuk all the time, it is great! Midodrine has had an enormous effect. It was difficult at first because I

I would still like a drug that makes me invincible! However, I can settle for a life with midodrine and all the lifestyle management factors now that I have seen the difference to my quality of life!………

Jenny Budden Sheffield

VASOVAGAL SYNCOPE AND THE MISDIAGNOSIS OF EPILEPSY Many patients are inappropriately labelled as having epilepsy. A study shows that each year over 90,00 people in England and Wales are misdiagnosed. Being labelled as having epilepsy can dramatically alter your life because of the stigma associated with this and the side effects of anti-convulsant drugs. Doctors have long suspected that many patients who are given this diagnosis do not have epilepsy at all - they have vasovagal or neurocardiogenic syncope. Vasovagal syncope occurs due to a brain reflex (often triggered by pain, fright, dehydration, low blood sugar or many other things) causing the blood vessels in the legs to dilate. Blood suddenly pools in the legs, the volume of the blood returning to the heart is reduced, the blood pressure falls, and the victim loses consciousness. Many patients with vasovagal syncope can react in a seizure-like fashion when they lose consciousness during a tilt table test. When some of these patients then undergo further tests including EEG, CAT and MRI scans, there is often no evidence of a true seizure disorder. However, there are many instances when the inappropriate diagnosis of epilepsy has been made prior to the tilt table test and anti-epilepsy medication prescribed. Some patients then lose their driving licence based on this incorrect conclusion. Does this sound familiar? If you have been given a diagnosis of epilepsy, despite negative EEGs, you should insist on being tested for vasovagal syncope. A 12 lead ECG, tilt table test and insertable loop recorder may indicate the true diagnosis and lead to the correct treatment. Booklets are available for tilt table test and insertable loop recorder. Note from Editor: An article on tilt table testing appeared in our Summer Newsletter/ No. 25 and can be viewed on our website.

POSITIVE ADVICE

Treat it as a challenge, not an obstacle....

Shine a Light on Education As proposed at the STARS conference 2006, we are currently establishing an education programme for use in educational settings from nursery to university, with the added possibility of reaching extra-curricular clubs. The project has two main aims: • To educate teachers, staff and carers on syncope and train them in condition management. • To provide information and advice for parents and sufferers on coping with syncope in their learning environment. The programme will consist of an advisory website, which will include resources on blackouts for use in the classroom; information packs; an educational DVD and in-house presentations, to be delivered by project volunteers. These will predominantly be for staff training and awareness purposes. As a part of the research into how this project could be made most effective, we are asking those who suffer from syncope and those who have, or know a child with the condition, to contact us with any suggestions. Ideas may be drawn from personal experiences and may include suggestions as to how schools could be more supportive, how negative attitudes can be changed, and further, what information they would need to be so. At this point we would also like to know, in your own words, why you feel that this project is a necessary one and the benefits that would result from it. We have received some feedback already but we do need more to make our research as accurate and useful as possible, so please get in touch! Once the project is established, STARS will be looking for volunteers to become ‘in-school’ presenters. Full training will be provided. Through this scheme we aim to offer staff/teacher training in syncope management. Please email education@stars.org.uk or contact Laura Nelson on 01789 450 564 for more

information or to volunteer Note: Laura is a graduate from Durham University and has recently joined the STARS team as she wants to gain experience in the charity sector.

COGNITIVE BEHAVIOURAL THERAPY Cognitive therapy is often mentioned in news articles and it is reassuring to know that well respected authorities are complimentary about it. Mothers with children and teenagers who suffer with anxiety disorders are signposted towards these therapists and medical experts recommend it for obsessive compulsive disorders and to help children suffering with depression. Some sources feel it could be helpful in dealing with children who refuse to go to school. 10

EMERGENCY SERVICES Here are three excellent ideas that would help the Emergency Services should you ever have need to call them out.

Message in a Bottle The Lions Message in a Bottle scheme is intended to help Emergency Services locate your medical details without delay. As part of the ‘Lions Caring for our Communities’, Lions Clubs throughout the UK are adopting this idea and there is no cost to you. The bottle comes with a form to be completed with your medical details. The bottle should be kept in the fridge door and the Emergency Services will be alerted to it by two special Emergency Green Cross stickers – one on the front of your fridge and the other on the inside of your front door. The bottles can be obtained from your local chemist or GP surgery or contact your nearest Lions Club. The Emergency Services are aware of this scheme and your details will then be passed to a doctor at the hospital.

In Case of Emergency (ICE) ICE1

We think this is an excellent idea and is something that should be considered by everyone who carries a mobile phone. In the event of your being involved in an accident, initially the police would try to contact your family through the contacts on your mobile. Their task would be so much easier and quicker if you included one or more In Case of Emergency (ICE) numbers in the phonebook.

It is suggested that three ICE numbers are included, labelled ICE1, ICE2 and ICE3. With so many children having their own mobiles, it would be reassuring to know that you would be contacted immediately should there be an emergancy.

www.housenumberid.com Another simple but excellent idea can be found on this website which could help Emergency Services locate your house quickly. Reflective plaques for your house name or number have been developed which will stand out during the day and shine brightly at night. It could make all the difference between life or death.

COMPLIMENT

“I know that Trudie is as good an expert as most in the field by now.” (Respected expert in the cardiovascular system)

to y a w l o ! o s c r e A t is s y m help

Well done Becky and Mark and thank you for supporting us!

Becky, whose mother is Sarah Boxall a STARS volunteer, was brimming with enthusiasm after the event “STARS has been a part of our lives for over 8 years. I know the money I have raised will help towards continuing to support families like ours and help raise awareness of reflex anoxic seizures. Both my younger sisters, Karla 9 years and Zoe 6 years suffer attacks and I would love, for their sakes, RAS to become known and accepted, particularly within the medical profession. Keep up the good work STARS team!! I would definitely recommend a skydive as a cool way to raise money for STARS.”

Becky Brett raised nearly £850 when she and her father jumped for STARS during the Summer. It was Becky’s first skydive but her father, Mark Boxall, had done almost 1500 jumps, including competitions.

All of us at STARS are full of admiration for Jan and John and say a huge thank you for the wonderful amount raised. Unfortunately for STARS, Jan has said this has cured her of wanting to do anything outrageous ever again.....

Louise, Jan’s daughter has been a volunteer for STARS for many years as Owen has suffered with RAS since he was a toddler. When Louise read about the opportunity to skydiving she emailed the link to her mother as a joke – the rest is history as they say!!

Grandmother, Jan Turrell, went skydiving this summer with her partner John Edgcumbe and between them raised almost £1700 for STARS. She and John, who live in Surrey, completed a 10,000 feet skydive – a first for both of them! Her grandson, Owen, aged 15 years, calls her his ‘adrenaline junkie Nan’!!

GRANDMOTHER SKYDIVES FOR STARS

Marathons, Skydiving, Dress-down Fridays, Scuba Diving, Raffles….you choose the fundraising idea and we will support you. So if you would like to raise some much needed funds for STARS, phone Matt on 01789 450564 or email matt@stars.org.uk.

Helen Mallan, Jim Thom and Sullivan Upper School for their continued and much appreciated support.

Sarah Nicholls for organising a skydive for her husband and his friends.

Huge thanks go to all our STARS fundraisers, including;

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D R O C E R D L R DIVING WO RS A T S R O F N BROKE mble

DIVING FOR STARS

runnING FOR STARS On 3 September 2006, I ran the Moray Half-Marathon – right up in the North East of Scotland! I was competing on behalf of two charities – Scripture Union Scotland and STARS STARS.. I had already run several 10k races during the last two summers so I decided it was time for a new challenge! I knew that my generous friends and family would be happy to support this personal challenge financially, so I decided to ask for sponsorship. I became aware of STARS through my friend Rona Saunders who was diagnosed with Neurocardiogenic Syncope nearly eighteen months ago. Rona is an an amazing person who is full of fun all the time!! She has recently completed her degree in primary teaching and has started her first job, which she loves. Watching her cope with life after developing such a debilitating health problem has been inspirational but it has also been extremely difficult for her family and friends to watch her life becoming restricted by this condition. I raised £1400 for the two charities. It was an honour to run this Half-Marathon for my friend!! Helen Reid, Falkirk, Scotland Congratulations to you Helen - thank you for the photograph of you and Rona ~ Editor

We are delighted to announce that our Patron and Trustee, Dr William Whitehouse completed the Robin Hood Marathon and raised over £500 Huge thanks go to all our other runners who bravely undertook the British 10K London Run for STARS: Bob French Bruce and Caryl Russell

BROTHERS RUN FOR STARS Miles and Darren Bentley from Doncaster ran the British 10k London Run this summer, raising nearly £700 for STARS. Miles (on the right holding Alex) was due to run with his wife Miriam as their son Louis suffers with RAS. Miriam was unable to do this and Darren (left) was volunteered! Alex, aged 5, was cheering them on. Miriam says that Louis’ big brother is a big support to him and a tower of strength for them. Well done and thank you Miles and Darren and we think Louis is very lucky to have such a kind brother. 14

JUDITH CHOOSES STARS The London Marathon 2006 was my first ever marathon. Shortly before Christmas I heard that my fourth attempt to gain a place had been successful. I had resisted one of the big charity places as I wanted to raise money for STARS. Now I had to train and not let STARS or myself down! My eldest daughter, Harriet, had experienced seizures and ‘breath holding’ from the age of one and 8 years on I still have such vivid memories of the relief and comfort it was to speak with Trudie directly about what was happening. My daughter’s experiences have been nothing compared to some of the stories I have read about in the newsletters, but the fantastic support and advice from STARS was no less appreciated. The marathon was going to be my way to saythank you. Winter and spring training was a combination hill climbs while Harriet had her piano lessons and children from school and my place of work. Raising registered with justgiving.com justgiving.com, which provided a really anyone raising money.

of runs with Brighton & Hove Running Sisters, cycle sprints between dropping off or collecting the sponsorship was the other problem, but STARS was fantastic online fundraising site that I recommend to

The day of the marathon was perfect for running; cool and a little damp. My daughters and husband Rex came on the coach from Brighton to lend support and not once did they complain about the weather or the miles they walked to get a couple of sightings of me. I had set myself the target of ‘running all the way’ which, to my delight, I achieved. I must have had a target time in the back of my mind as I was pretty satisfied with my time of 4hours 50 minutes. I raised a total of £965 for STARS - my ‘thank you’. Judith Matthews Brighton What an achievement! Congratulations from us all ~ Ed

TO FRANCE AND BACK IN 30 DAYS This September I completed my sixth sponsored solo cycle ride since retirement in 1996, with a self-imposed challenge to cover between 1900 and 2000 miles in 30 days. The primary aim, however, was to raise money for STARS, with which my daughter Mandy is closely involved. It is always great to learn from the newsletter about the charity’s success in raising awareness worldwide of this misunderstood condition. Apart from one apocalyptic thunderstorm, my trip round northern France was blessed with glorious weather. However, in my determination to stick to minor roads I was usually faced with either serpentine lanes that seemed to lead nowhere - or gradients of horrendous severity! No matter, even the toughest day’s ride had its promised counterpoint in a good meal followed by a chat with the locals over a Calvados or three. Nigh on 2000 miles completed and over £500 raised. Heartfelt thanks to my sponsors. Here’s to STARS - and to the next trip!

Chris Pelly, Dorset Chris’ daughter, Mandy Warren, suffers with VVS and has been a STARS volunteer for over six years, attending all our conferences and volunteer meetings, as well as designing our database. We are so grateful to both of you for your support. - Ed

How do you solve a problem like Going to the Dentist? then you may need even more treatment or have raging toothache. I think I learned the ‘first rule of holes’ quite early in life - when in one, stop digging! e’ve got teeth and we’re having to keep them longer than ever because we live a lot longer than the early ‘prototype’, who probably died long before their teeth decayed. They didn’t eat sweets either! Mention going to the dentist and most people will admit to some degree of anxiety and dislike and to many people over a certain age, the words ‘Dustin Hoffman’ and ‘Marathon Man’ spring to mind. This is a film in which Dustin Hoffman’s character is tortured by a Nazi dentist. Luckily I haven’t seen it and I don’t intend to!

So back in those days my approach and probably the only approach available was to ‘feel the fear and do it anyway’. This worked in the sense that I got my fillings done - lots of them! However it didn’t stop me fainting, which would usually happen after the local anaesthetic injection. It didn’t help that my dentist during my teenage years used to get very cross about this. Thankfully he retired and all the other dentists I’ve been to over the years have been patient and understanding. Fainting was quite normal in my family and not considered a reason to consult a doctor. However, following a series of unpleasant faints, I surpassed myself at the dentist’s with the result that he sent for his ‘crash trolley’ and called an ambulance. To cut a long story short, during the following months I was thoroughly checked out and the conclusion was, that I was indeed ‘just fainting’ and that some cognitive behavioural therapy for needle phobia, and the use of a technique called ‘applied tension’ (where you use your own muscle power to squeeze your blood vessels, with which to counteract a fall in blood pressure) may help. My dentist was still not happy to treat me and referred me to the dental hospital, which he said would be a ‘safer’ environment - a comment I didn’t find very reassuring.

Now, I’ve had a bit of a problem with dental treatment, as have my two children but we have each dealt with it in different ways – there is always more than one way to solve a problem. I’ve had an almost lifelong talent for fainting and have indeed excelled myself at the dentists. The thing I never really understood was why other people, who seemed much more nervous than I, didn’t faint, but I did. Now I believe that underlying this is what seems to be an inherited fainting response.

There is always more than one way to solve a problem

However, I never fell into the trap of avoidance of dental treatment, which is a common and understandable response. If you consider that you’re anxious and then you have the unpleasant experience of fainting, the result is even greater anxiety and a reluctance to return for more treatment. The trouble with putting off that dental appointment is that it just delays the moment when you have to deal with it and by

After a long wait I finally had an appointment with their clinical psychologist, but the local PCT in their infinite wisdom had decided to withdraw

the funding for her post. However we managed a few sessions before she left and then I saw the dentist she had liaised with for me to undergo some exposure therapy to the dental injection, during which I would be able to ‘road test’ the applied tension technique.

the treatment, collectively led to a successful experience. He was absolutely delighted, felt good for having finally dealt with it and had no memory of the experience. As a result of this, his confidence in future situations will be much greater. Dental hospitals also carry out treatment with intravenous sedation but the NHS waiting list can be very long.

This involved looking at and handling the syringe, pretending to inject (with the needle cap on and then off) and finally inserting the needle for a count of ten. This often takes place over a number of sessions, but we got through it all in one. Pretending to inject just felt silly and, just as during the real treatment, it was only actually sticking the needle in that triggered the response. I am now waiting for an appointment to finally get the filling done that my dentist was going to do when all this started. I have since used the applied tension technique in other situations and, so far, I’d say it works to a point, depending on the severity of the reaction you are fighting - maybe I need more practice!

My 14 year old daughter has also experienced fainting symptoms, although not in a dental environment. When she needed her first ever fillings she was quite apprehensive and also has the family needle phobia. However she was quite composed as she went into the surgery. I was in the waiting room assuming the treatment was under way, but actually she was in there in tears, refusing to have the local anaesthetic. Afterwards she felt awful and very embarrassed about this experience. Fortunately the dentist was very patient and understanding and suggested she came back another day after taking a temazepan tablet, at home an hour beforehand.

You can be referred to a dental hospital’s anxiety management clinic by either your dentist or GP. My 19 year old son’s phobia of needles and dental treatment precedes his knowledge of my problem, which he insists was a great surprise to him, so I don’t think it is ‘learned behaviour’. He went for an examination but experienced symptoms of fainting requiring him to lie on the floor, although he didn’t pass out. This put him off the idea of dental treatment even more and add to that a fear of needles and he soon entered the ‘avoidance zone’. He knew he needed to get his teeth attended to, but come the time of the appointment his anxiety would overwhelm him and he couldn’t even leave the house. He decided to try hypnotherapy with someone who had been personally recommended to us by a friend. He found this a very positive experience despite having another episode of pre syncope during the first session.

She was a little worried this would render her helpless and out of control but she found that, as had been explained to her, it greatly lessened her fear and, although she felt a bit sleepy, she was still aware and able to interact and remember it all. She was a bit drowsy afterwards and lay on the sofa watching television and laughing at things that wouldn’t normally make her laugh! It was a confidence building experience and she was very pleased with herself afterwards. If she needs more treatment she would have no hesitation in doing this again but hopes that in future her anxiety levels may reduce to a level that she can handle.

Following this he made a private appointment at a dental referral clinic in Surrey (a long way, It was a but worth it!) who confidence were understanding building and effectual. It was as a result of the experience hypno therapy which led to his mere presence at the appointment; a sedative drink in the waiting room and intravenous sedation during

So if you’ve been hesitating, procrastinating or locking yourself in the bathroom come the day - be pro-active! Find yourself an understanding, user-friendly dentist and discuss your options. It may just put a smile on your face! Susan Golby Oxfordshire.

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Congratulations to Clare and Simon Martin on the arrival of Bridget Sophie Clare on 19 July 06. Clare suffers with VVS and POTS and we were all so pleased when we received this photograph with the good news. We often have phone calls from worried sufferers of vasovagal syncope who are pregnant and are concerned with how it will affect their pregnancy and particularly the actual birth. During pregnancy, blood pressure often increases with the result that syncopal attacks become less frequent and even disappear. The actual birth does not normally present a problem as there is no surprise of sudden pain. However, it is important that your consultant, midwife and attending medical staff are aware of your medical condition.

WISE WORDS

“I believe that we are never given anything in life that we cannot handle, even if we don’t know we have the means to handle it - because we do - we just need to figure out how..” Anon (New Zealand)

Dear Trudie Just a note to thank you for the peace of mind I have had since speaking with you and receiving your literature through the post. I feel like one of the lucky Mums, since we have had good information early on (she has had what I think have been four RAS episodes). Fortunately my GP diagnosed vasovagal attacks/over sensitivity and through my Internet search I found you and your charity. As you know, RAS is incredibly stressful to witness and I am just thankful we have not had the added stress of wondering what is wrong with our daughter. I am sure that if/when she has another episode I shall no longer have the fear of what is happening and of whether my daughter is dying in my arms. Knowledge truly is a wonderful thing. I believe that early diagnosis plays a crucial role in the impact RAS has on family dynamics. Since we now have all the facts, we will be able to deal with these episodes in a calm effective manner, and we shall not be wrapping our active mischievous two year old up in cotton wool! I shall be completing your questionnaire and further support your charity by becoming a member. Thank you once again and keep up the good work. Regards Rebecca and Millie Gray Barnet

WANT TO TALK

Do you have access to the Internet? Are you a STARS subscriber? Then why not join the STARS Syncope Message Board and swap experiences, ask for advice and realise that you are not alone.

Just go to the Subscribers’ Area of the STARS website (www.stars.org.uk), log-in and check into the Message Board section. Get chatting!! BLOG - the latest service to be offered to our subscribers 19

Hard to Swallow I was 32 and healthy when I visited the Hoover Dam and had a first ever “grand mal seizure”. That was the beginning of my medical journey which would take five years before my true condition was diagnosed and properly treated. It if weren’t for my being a nurse, taking some initiative, and finding the STARS website, I might never have learned the truth. ollowing the seizure I was led through a world of neurological workups, in hospitals in Nevada and later in my home state, Connecticut. Even though every neurological test came back negative, my neurologist placed me on an anti-seizure medication and told me not to drive for six months. He said that as many as 11% of the population have a one-time seizure in their life, never to be troubled by the event again. He believed that I fell into this category. But the seizure seemed to trigger a new problem.

While eating, I often would feel faint. After the first few bites I would “swoon” for several moments—nearly but not quite losing consciousness--and then feel fine. My neurologist told me this had nothing to do with the seizure and added that I should eat breakfast every day. He weaned me off the anti-seizure medications and discharged me, telling me to be in touch if I had another seizure. During the next two years, I worked full time and I got married. I continued to nearly pass out on a daily basis, and still didn’t know why. I was so used to the “swooning” that during meals I would routinely lower my head when the lightheadedness came. I would do this while at work, at restaurants, anywhere. My husband and co-workers became accustomed to my strange ritual. It got worse. I started actually blacking our for very short periods—perhaps a few seconds. I was trying to figure out the best way to get the right medical help, and then found out that I was pregnant. Uncannily, the swooning stopped entirely during the pregnancy and I thought I was fine. I don’t remember exactly how old my infant son was when the swooning started again, but it did. I dealt with it the same way I had in the past. I would begin to eat, feel like I would pass out, lower my head and the feeling would quickly go away. Life went on like that--until I had a second seizure, nearly five years after the first. My two-year-old son and I were home alone, and I was watching him play as I was eating breakfast. The next thing I remember is waking up on the floor with my upper arm muscles heaving. I was now highly motivated to get to the bottom of my problem. I consulted a new neurologist and again all tests were negative. I was informed that because I had suffered two unexplained seizures within 5 years that my diagnosis was epilepsy. I was put on anti-seizure medication and told not to drive again. I told the neurologist about my daily swoons and the blackouts associated with eating. He told me that the sensation was probably an “aura” and part of my diagnosis of epilepsy. All I can say is that this just felt wrong—something was telling me to look further.

I started searching the web extensively, looking for clues as to what might be happening to me. I happened upon the STARS site and e-mailed Trudie who concurred that epilepsy may not have been the correct diagnosis and asked if I had seen a electrophysiologist (heart rhythm specialist). About that same time, a physician friend also suggested that I be seen for a complete cardiac work up. I asked my neurologist for the referral, but he responded by saying that there was no mistaking that I had epilepsy, and that if I had any doubt I should attend an epilepsy clinic at Yale University Hospital where they “will make you understand.” I decided to find myself a cardiologist. The cardiologist sent me home wearing a monitoring device, and after 24 hours he called and said “I know what is wrong with you.” The monitor revealed that my heart was stopping for 5- to 10-second intervals whenever I began eating. He said my diagnosis was “Swallowing Syncope,” a rare problem where the act of swallowing triggers the vagus nerve to overstimulate the heart’s electrical conduction system, thus cause it to stop beating. The cardiologist advised that I should get a pacemaker. While a pacemaker wouldn’t correct the underlying vagus nerve problem, it would serve as a safety net when the vagus nerve triggered my heart to stop. My demand pacemaker was inserted in January 2005 and I have been completely symptom free ever since. After my pacemaker was implanted, I read the warnings about not going through airline security, not getting near large speakers or other electromagnets and, incredibly, not going to the Hoover Dam which is one of the world’s largest electromagnets. I now realized it might not have been coincidence that I had an initial seizure while my future husband and I were standing on the Hoover Dam looking at the collection of high-voltage electrical wires heading out in the direction of Las Vegas! Perhaps I had some latent electro-cardio issues that got worse that day. The moral of the story? Think twice before visiting the Hoover Dam, and don’t always listen to your neurologist. If in doubt, seek a second opinion. Sincerely, Martha Bryce, Connecticut, USA

AIRPORT SAFETY With security even more stringent at airports, it is essential that you carry your device identification with you if you have a pacemaker or an internal cardiac defibrillator (ICD). It is important that you tell the security staff that you have one of these appliances fitted as the security metal detector will recognise it. You should ask for a hand search or be checked with a hand held metal detector, which must not be placed directly over the device. 21

Don‛t spoil me. I know quite well I shouldn‛t have all I ask for. I‛m only testing you.

Please REMEMBER your SUBS are due NOW NOW!!

Don‛t be afraid to be ﬁrm with me. I prefer it; it makes me feel secure.

(see subscription form)

Don‛t let me form bad habits. I have to rely on you to detect them in early stages.

These allow STARS to offer support and help people just like YOU!!

Don‛t let me feel smaller than I am. It only makes me behave stupidly “big”. Don‛t correct me in front of other people if you can help it. I‛ll take more notice if you talk quietly in private.

Your subscription gives you access to the new Syncope message board which is already proving very popular popular. (see page 19)

Don‛t protect me from consequences. I need to learn the painful way sometimes. Don‛t make me feel my mistakes are sins. It upsets my sense of values. Don‛t be too upset when I say “I hate you.” It isn‛t you I hate but your power to thwart me. Don‛t take too much notice of my self-ailments. Sometimes they get me the attention I need. Don‛t nag. If you do, I‛ll have to protect myself by appearing deaf. Don‛t forget that I can‛t explain myself as well as I‛d like. This is why I‛m not always very accurate. Don‛t tax my honesty too much. I‛m easily frightened into telling lies. Don‛t be inconsistent. It completely confuses me and makes me lose faith in you.

Pounds for Parents Campaign Contact a Family are running a campaign to help families who have a child with a disability claim their full benefit entitlements. Many parents do not know where to go to ask about the benefits that are available to them and then find the system and form-filling too complex. If you would like a benefits check, there is a welfare rights specialist available on Contact a Family helpline 0808 808 3555, Monday to Friday, 10am to 4pm and on Monday evenings 5.30 – 7.30pm.

Don‛t put me off when I ask questions. If you do, you‛ll ﬁnd I stop asking and seek information elsewhere. Don‛t tell me my fears are silly. They are terribly real. Don‛t ever suggest that you are perfect or infallible. It gives me too great a shock when I ﬁnd out you are neither. Don‛t ever think it‛s beneath your dignity to apologize to me. An honest apology makes me surprisingly warm to you. Don‛t forget I love experimenting. I can‛t get on without it, so please put up with it. Don‛t forget how quickly I‛m growing up. It must be hard to keep pace with me, but please try. Author Unknown

A VIDEO OF YOUR STORY ON THE INTERNET WE NEED YOUR HELP Whilst we’re never going to compete with You Tube, we are launching a new educational video project with which we need your help. One of the most successful parts of the STARS website is the patient case study page. On this page many members of STARS appear with a short account of how blackouts affected their lives, as well as reviews of their paths from diagnosis to treatment. For anyone looking for information for the first time, these pages are invaluable as readers realise that they are not alone, and that many others have experiences from which they can learn. Importantly, we have also learned that doctors, nurses and journalists also find the pages immensely informative as they use the stories for education and reassurance. This professional interest led to requests that we add video clips of patient case studies to the website. Hearing ‘first hand’ about others’ experiences, as well as the implications of effective diagnosis and treatment, is incredibly powerful and greatly enhances the ability of people to understand syncope and the dramatic impact it can have. We can only achieve this with your co-operation. Do not underestimate how important your story could be to others and how powerful a short video clip of you will be. Please email jenni@stars.org.uk to let us know that you want to take part. We will then arrange for you to be interviewed on camera – in your home or wherever is convenient – so a clip can be recorded. Only with your approval will we then add this to our website

SYNCOPE Multiple Attacks Misdiagnosis of We have been asked to help with research into Blackouts simultaneous multiple syncopal/RAS attacks. The researchers are interested to find out how often this kind of syncope occurs and if in particular circumstances. Although this is not a common occurrence, we are aware that some of our members do experience this from time to time and we would very much like to hear from you.

As part of our ongoing media campaign to raise awareness of blackouts, we would be interested to hear from anyone who has been misdiagnosed or is experiencing difficulty in obtaining a diagnosis for their unexplained faints/blackouts. We are looking for sufferers who would be prepared to share their experiences with the media so that articles can be written about real life cases. please email trudie@stars.org.uk.

We would like to hear from all ages, no matter how infrequent the multiple attack. In the first instance please email trudie@stars.org.uk.

As always, any information and details you give will be treated as confidential.

Make 2007 the year that www.everyclick.com becomes the home page for all STARS computers! Here is a great way to help STARS raise money without costing a penny. STARS has signed up to everyclick.com so help us to raise money just by searching the web! Everyclick is an internet search engine with a big difference.... it donates half its revenues to charity! Just make www.everyclick.com/uk/syncopetrustandreflexanoxicseizures your home page and make sure you use it whenever you search the web! It does not cost us, or you, a penny so please use it to support STARS. Trudie set it up on her computer and raised £2.75 in one day! Imagine how much we could all raise over a year, and if you tell your friends, family, maybe even your employer and work colleagues, we could raise even more. Just take a look at this new search engine and consider using it to help raise much needed funds.

Help spread the word. Tell your friends about everyclick.com

RAISE AWARENESS BY WEARING A STARS WRISTBAND Whether you are running for STARS, diving for STARS or fundraising for STARS, wear a STARS wristband and support ‘shining light on Blackouts’, which will help everyone with syncope and reflex anoxic seizures. The blue bands cost £1 each plus £1 p&p per order. Order on line at www.stars.org.uk or telephone 01789 450564.

Volunteer Information Day Saturday 10th March 2007 We would like to become more involved in new projects throughout next year and beyond, which will require help on a regional level. If you have volunteered before or, indeed, would like to become a volunteer, then you will be very welcome to attend an Information day at our office near Stratford upon Avon on Saturday 10th March 2007. We will of course ensure that full training and support is provided to all our Volunteers. For more information please email Carole Ellis, Project and Volunteer Co-ordinator at volunteer@stars.org.uk or telephone 01789 450564.