STARS Issue 25, July 2006 by www.heartrhythmalliance.org

The uts o k c Bla rust T JULY 2006 : ISSUE 25 WORKING TOGETHER WITH INDIVIDUALS, FAMILIES AND MEDICAL PROFESSIONALS TO OFFER SUPPORT AND INFORMATION IN SYNCOPES AND REFLEX ANOXIC SEIZURES

STARS IN THE USA BY 2007 REFLEX ANOXIC SEIZURES are 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), also known as Transient Loss of Consciousness (T-LOC) or blackouts, 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

It is with great pride and excitement that I can announce that we are setting the wheels in motion to establish STARSUSA.

I have

begun working with the attorneys and I hope that we will be up and running in early 2007. Many of our American members have been asking when we would open a Chapter in the States. It is something I have wanted to do for many years and finally it has happened!

I am still pinching myself to make

sure I am not dreaming! STARS is now incorporated in the USA and we are waiting for the paperwork from the Inland Revenue Service to become tax registered. A Board has been established, with founding members Prof. Blair Grubb, Cardiologist from Toledo University Hospital, Mrs Linda Kadesch from Hilton Head Island and Trudie Lobban, Founder STARS . However, we are looking to recruit further active and committed Board members and also a team of volunteers to begin raising awareness and funds for STARSUSA. If you are self-motivated, have an interest or personal involvement in syncope or STARS, please contact trudie@stars.org.uk with your reasons to become an official volunteer for STARSUSA or to join the Board. If there is sufficient interest from volunteers, we plan to hold a meeting in the USA early 2007. The STARSUSA Board met for the first time in Boston at the Heart Rhythm Society meeting – by the time you receive this newsletter, the very first Board meeting will have taken place! Trudie Lobban Chief Executive

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

Letter from Trudie Lobban STARS Chief Executive Life continues to be very busy in the STARS office. We have been increasing our profile at many medical and patient meetings – the British Cardiac Society in Glasgow Scotland, the Heart Rhythm Society in Boston USA and the International Association of Patient Organisations annual conference in Barcelona, not forgetting meetings in Belgium, Switzerland and Norway! STARS has either had an exhibition stand at these events or I have been asked to present. All this helps to achieve our key objectives – awareness, support and information. After the fanfare from the launch of the NSF Chapter on Arrhythmia, I was asked to join the Department of Health Implementation Board. It was a privilege to be asked and gives us the opportunity to ensure that syncope and RAS services are not overlooked. STARS. We attended all six regional There has been a lot of national and international travel for STARS meetings organised by Arrhythmia Alliance. I presented at four of the meetings and Andrew Fear, our new Trustee, presented at the other two. It was encouraging to hear what the clinicians had to say, demonstrating pockets of best practice, and to listen to the plans of the Heart Team at the Department of Health, presented by Prof. Roger Boyle, National Director for Heart Disease. It was a pleasure to meet all those of you who made the effort to attend and I trust it gave you encouragement and the opportunity to speak to others, including the medical professionals and Roger Boyle. A huge thank you to Arrhythmia Alliance for facilitating these meetings – it would be wonderful if they could be repeated next year. Good news!! The Review Committee at NICE (National Institute of Clinical Evidence) have agreed to propose guidelines on Transient Loss of Consciousness which, of course, includes syncope. NICE will hopefully announce acceptance in September/October. We will keep you posted. Finally, over the next few months (as if we haven’t enough to do!) we hope to launch a media campaign highlighting syncope patients, children with RAS, mis-diagnosis, success stories – what has and has not worked for you etc. If you would be interested in speaking to the press and helping to raise awareness then please let us know. We will not give your details to a journalist without your prior authority. Please e-mail jenni@stars.org.uk stating that you are happy to talk about your experiences and give your permission to allow a journalist to contact you. We would not set anything up without speaking to you first but we have to have written authority on your records. For more details see page 16. I hope you all have a great summer, keep in contact and if there is anything we can do to help you, PLEASE ASK! See you in the Autumn at the STARS Conference!

Trudie 2

Promoting STARS Around the World Together we can….promote patient-centre healthcare worldwide In February I travelled to Barcelona to attend the International Alliance of Patients’ Organizations (IAPO) Congress. It was very well supported by over 150 participants from around the world, including healthcare representatives, global health professionals associations and the World Health Organisation (WHO). For three days I worked with representatives of these groups, sharing experiences and pledging our commitment to bring patients to the centre of healthcare systems. The key event was the launch of the Declaration on Patient-Centred Healthcare, containing five principles – Respect, Choice and Empowerment, Patient Involvement, Access and Support and Information. If government, health professionals, service providers and health-related industries committed to these, then the future for patients would be considerably brighter. Patient safety was a main topic, with issues such as medical errors, importance of communication and keeping patients informed and balancing risk and benefits of medication providing a basis for powerful discussion amongst the delegates. These are all issues that we here at STARS feel very strongly about and which I am constantly campaigning for at every opportunity.

Trudie Retreats to Arizona In March I was invited to join seven USA Founders of non-profits charities in Arizona. I was the only non-USA delegate! It was an honour and privilege to receive the invitation and I duly set off on the long flight to Scottsdale, Arizona. It was one of the best meetings I have ever attended. To share experiences, successes and even failures with fellow founders representing patient groups of various sizes and conditions was very worthwhile. It certainly renewed my passion and recharged my batteries, enabling me to take STARS forward over the coming years. is so important for all of us to take time out to reassess our lives and this training certainly made me do just that. It reminded me why it is so vital to have the patient voice heard in the corridors of Westminster, in hospitals and everywhere else! A huge thank you to the sponsors who enabled me to attend.

Trudie and 6000 Cardiologists Arrive in Boston 16 May 2006 saw Trudie and 6000 Cardiologists arriving in Boston for the annual Heart Rhythm Society Conference. As Trudie had what appeared to be hourly meetings for the duration of her stay, I was invited to attend so I could look after the STARS and AA stand. The first morning the alarm went at 4.45am as Trudie had a breakfast meeting at 6.30 am. Good old Americans making breakfast as early and as enormous as they possibly can!! I headed straight to the exhibition hall hoping there would be much interest in our stand and the UK Heart Rhythm Congress in September. I wasn’t wrong! Leaflets and information packs were flying off the stand in all directions with even a representative from the nail filing company showing great interest in arrhythmias! The exhibition hall was enormous – big, bold with waterfalls on stands, trucks, masses of gadgets and moving objects – all extremely interesting. We were visited by many eminent cardiologists and consultants, including Drs John Morgan, Graham Stuart, Adrian Morley Davies, Nick Linker (shown left), Neil Sulke, Derek Todd, Prof. Cliff Garratt to name but a few. However, the day was far from over as after Trudie’s five meetings we had to dash back to the hotel and put on our glad rags to attend a formal Industry dinner – no rest for the wicked as they say! Further familiar faces visited the stand the following day, with even more interest if that was possible. Trudie was obviously networking well and my nails were sparkling!! Despite a level of exhaustion not yet previously encountered, this trip was a fantastic experience which gave me an insight into the Cardiology world!! Laura Newton - STARS Events Organiser (shown left with Nicola Meldrum ICD Nurse Specialist)

Different Experiences of

Tilt Tests The procedure used to administer tilt table tests can vary considerably from hospital to hospital. During the past few years, I have had tilt tests at two different hospitals and there were considerable differences in the procedures and equipment used.

your blood pressure or heart rate started to change significantly, he took them constantly until you either fainted or experienced a dramatic enough deterioration for him to be able to reach a diagnosis, at which point he lowered the table. If you didn’t faint within about an hour, the cardiologist squirted nitro spray under your tongue to try to provoke your usual symptoms.

My first tilt test was performed in the cardiology department at one of my local general hospitals in August 2001. My cardiologist has since retired but this is the procedure that was used for tilt tests at that hospital at that time:

Once your heart rate and blood pressure had returned to normal and you were feeling OK the cardiologist gave you your diagnosis (if the tilt test was positive) and told you what reatment would be tried first. You were then free to go home.

You didn’t have to fast or refrain from drinking before the test. The test was performed by the cardiologist. There were no other medical personnel in the room but the cardiologist opened the curtain on a window between the tilt table room and his staff’s office. (I assumed that this was for chaperoning purposes even though my husband was in the room with us). There was a resuscitation unit plugged in immediately outside the door of the room in which the test took place. The room was quite cool but not too light. The cardiologist didn’t speak during the test but you couldn’t help but to be a bit distracted by the activities of the staff in the adjoining office.

My other tilt tests were performed in a specialist hospital autonomic unit in April 2002 and, again, in April 2004. This is the procedure that is used at this unit: You don’t have to fast or refrain from drinking before the test. When you arrive in the autonomic unit you are asked if you want to use the toilet before you have your tilt test. I think this is not only to reduce the chance of incontinence if you faint but so that the distraction of needing to go to the toilet doesn’t interfere with your test results.

You don’t have to fast or refrain from drinking before the test

For the test, you lay down flat on the tilt table with your feet on the foot board and you were strapped on. You had a manual blood pressure cuff attached to one arm and a 3-lead ECG attached to your chest. You were not given an IV. The cardiologist manually took your blood pressure and pulse while you lay still. You were then tilted at nearly 90 degrees for up to one hour. During this time, the cardiologist manually took and recorded your blood pressure and pulse every five minutes. Once you started to experience symptoms or

The unit has two tilt tables in separate but adjoining rooms. The rooms are light and cool. In fact, on one occasion I was so cold that they had to give me a blanket to stop me shivering during the test. The tilt test is performed by a technician or autonomic nurse and there is usually only that one person in there with you. There is no doctor present. Female patients are not routinely chaperoned if their test

tested to give base line blood pressure and heart rate readings. You are then tilted at about 60 degrees for either 10 minutes or up to 45 minutes. The tilt table is returned to the horizontal position if you faint or if the allotted time has passed and you haven’t fainted. If you don’t faint within the allotted time, you are not given any provocative agent to see if that makes you faint. However, sometimes the person performing the test will try to see whether you faint at the sight of blood by making a big show of showing you a large hypodermic needle and then using it to take some blood from you. Some people who faint during the tilt test are then given atropine and tilted again but, whether or not that is done, depends on exactly what happened to your heart rate and blood pressure when you fainted. People who don’t faint on the tilt test are not given the atropine test.

is performed by a man. I couldn’t see a resuscitation unit nearby but the layout of the unit is such that, if there was an emergency, the technician would be able to summon help quickly. The tilt test is often filmed but will only be used for training purposes if you sign a form to give your consent. If you don’t faint during the test, the film isn’t kept. At this autonomic unit there are two types of tilt test - the 10 minute tilt test, which lasts a maximum of 10 minutes and is usually performed as part of a set of autonomic function tests, and the full -length tilt test, which lasts up to 45 minutes. It is common for patients to be given both tests but on different occasions.

You lie down flat on the table with your feet on the foot board

For the tilt test, you lie down flat on the tilt table with your feet on the foot board and you are strapped on. You have a 5 minute automatic blood pressure cuff attached to one arm (usually your right arm), a constant blood pressure monitor attached to the middle finger of your other hand, a 3-lead ECG attached to your chest, a sticky tape attached to your top lip (to measure your breathing) and a small microphone attached to your shirt in the middle of your chest (to help keep the constant blood pressure measurements accurate). You might have a cannula put in a vein in one of your arms so that blood can be drawn before and during the test but that isn’t always done. You are not given an IV.

Once your heart rate and blood pressure have returned to normal after the test, you are free to return home if you are an outpatient or to be taken back to the ward if you are an inpatient. If you are an inpatient, the tilt test is probably just one of a number of tests that you will have during the course of a few days. It can take a few weeks for your consultant to receive all your test results so you shouldn’t expect to receive a diagnosis or treatment plan before your follow-up consultation with your consultant.

You have to lie still until you are completely

Anon

Rapid Access Blackout The call for Rapid Access Blackout Clinics (RABC) is strong. We believe, as does the Heart Team at the Department of Health, if these multi-discipline clinics are established it will lead to fewer mis-diagnoses, quicker and correct diagnoses and treatment options, all of which wil lead to an improved quality of life for all those affected by blackouts.

exists and then let us know by e-mailing trudie@stars.org.uk or telephoning us on 01789 450564. We plan to map where these clinics exist, where there is no service and how they can be developed. It will also help future sufferers when we are able to signpost them to a Syncope Clinic in their area.

What would really help us all is if you could contact your local/regional hospitals to establish whether a Syncope Clinic/Falls Clinic already

Please help us to help others and who knows it may even help you!

GARY’S “PARTY PIECE” My husband, who is 60, is not one for correspondence, therefore I am telling his story. Gary had his first blackout when he was 17 as the result of a gory film. His second attack wasn’t until much later (10 years) when I was having my teeth out; he ended up on the next bed to me! It was 20 years before the next attack (another gory film) so we shrugged them off as his ‘party piece’ and although they were not pleasant and Gary would have to sleep for 24 hours afterwards, they did not bother him too much at all.

This time it really upset Gary as he spent the whole journey on the floor of the place and had to be checked over by the paramedics on arrival. There was also the added embarrassment of incontinence, which has now happened twice. It was at this point my sister suggested we go on the internet and we found STARS. The newsletter was an eye opener as I could never feel a pulse or heartbeat and here was a clear description of the symptoms Gary had when having a blackout. Our GP sent us to the Seizure Clinic again, we felt sure there must be something that could be done, but they could do very little. So I poured my heart out to Jenni at STARS and she put us in touch with a Professor in Cardiology. He recognised the “horror story” as a classic case of syncope and said he would not rule out a pacemaker. Gary was then sent for the tilt table test, which was negative.

They then seemed to go up a notch and Gary would have one every year or so when his stomach was upset and they seemed to be getting more severe. Gary’s father and our son used to faint so we thought “just one of those hereditary things we have to put up with.” Then they started to interfere with our social life, stopped us from going to a big concert and made us a day late going on holiday. When we went to Greece in 2002 Gary had the worst yet and I thought this time that I had lost my husband. Gary was unconscious for what seemed like an hour but was probably 15 – 20 minutes.

Unfortunately the Professor left this clinic and we were subjected to a more junior doctor who did not believe that Gary had syncope at all. Once again, STARS helped and we were given the name of another cardiologist who has just inserted a monitor in Gary’s chest to see if his heart does stop. When having it fitted Gary had an attack and his heart rate immediately dropped. The monitor will be in for up to 18 months and will hopefully give a clear picture of what happens when an attack occurs. Gary’s goal is to have a pacemaker fitted. He has kidney problems and although these are serious enough, to put an end to the syncopal attacks would make such a difference.

When we came home I asked Gary to see the GP about the attacks as I was frightened to go on holiday again. Gary’s attitude was that they did not bother him as he was unconscious anyway, but we duly went along to our GP who was sure this was epilepsy. We went to the Seizure Clinic where he was assured that it was RAS and told that it was nothing to worry about.

To be continued in about 18 months……..

After the attack in Greece, they came fast and furious. We were flying on holiday in 2004 and he had one on the plane. What a nightmare!

Adele Fosbury Glasgow 6

I TRAWLED THE INTERNET AND FOUND STARS

Each time I read the stories in the Stars newsletter it reminds me of the relief and reassurance I found when I ﬁrst stumbled upon Stars. Jenny was 15 months old when out of the blue she let out a strange cry, collapsed into a ﬂoppy grey state, her eyes rolled back and she stopped breathing at an indoor play centre. The calm and collected person I had always been in public became a hysterical mother who thought she‛d lost her child forever. After the longest minute of my life she cried and breathed again. The ambulance arrived seconds afterwards. The ambulance crew asked if she was teething, which as it turns out was to be true. She went into a deep sleep for a couple of hours and we sat and watched her like hawks. A second episode occurred soon afterwards and Jenny was referred for scans for epilepsy.

myself and obtained the diagnosis.

Jenny has had 25 episodes, the last being at 4 ½. Almost all result from a bump to the head and a few from sudden shock. Most have occurred in the summer and tend to be if she is hot or tired. Whilst the seizures still alarm other people,they now don‛t worry me at all and I am more concerned about whether I have spare clothes as Jenny always loses continence on coming round. Jenny was 5 this month, that magical age by which “most children outgrow RAS”. I felt it was all over for us until my husband‛s cousin phoned up recently and relayed an identical story about her little girl who had her ﬁrst episode whilst teething and getting a bump. What is of interest is the fact that both sets of parents have unexplained infertility, both couples have had a boy and a girl through IVF and in both cases it is the girl who has RAS. Has anyone else discovered a similar hereditary link and / or a link to infertility and IVF? It was however pleasing to hear an immediate diagnosis from their GP, conﬁrmed soon after by a consultant.

I knew it wasn‛t epilepsy so trawled through the internet until I found the STARS website. I cried as I read the information and spoke excitedly to the computer screen shouting “that‛s it, Jenny has RAS”. I spoke on the phone to Trudie who reassured me further. My GP was most interested in the research and was more than happy to refer me to Dr Whitehouse at Queen‛s Medical Centre in Nottingham. Comfort from He did however ask me to ponder STARS turned the beneﬁts of receiving a diagnosis. the worst minutes If I was so convinced it was of my life into RAS and there is no need for something treatment, why go and have Jenny labelled which may have manageable implications for how she is treated at nursery or school. Good advice but I still needed the peace of mind for

I hope that they and many others ﬁnd the same comfort from STARS that turned the worst minute of my life into something manageable. Thank you.

Rachel Morgan Derbyshire

Never Accept the Unacceptable

I began fainting when I was 12; I’m 24 now. 50% of my life has been faint free, 50% hasn’t! Quite an apt figure really- is the glass half full or half empty? I’d be inclined to say half-full, though it doesn’t always feel that way.

Syncope rearing its ugly head, but my pulse slowed with that, it didn’t race. I knew something else was going on, so I researched “postural tachycardia.” Imagine my shock when I did - POTS mirrored my symptoms exactly. I went back to my GP, armed with readings and literature - and he instantly congratulated me on doing what he hadn’t been able to- finding out what was going on!

I fainted my way through my teens, on account, the Doctors said, of heavy periods. True enough, I did faint more at the time of the month. But I always felt something else was going on too. Still, at 16, things improved and I had 3 faint free years. I moved away to St Andrews University and was having a ball.

In January 2005 I was diagnosed in London with POTS. Since the flu virus, things haven’t been the same. I graduated a year late from St Andrews - but my glass remained half full - I got a first, and partied at the ball with Prince William! I have been back and forth between cardiac care units like a yoyo. I’ve become used to it though, I am now attuned to my body and can get enough of a warning to tell people and usually prevent an injury. My pulse can be anything from 30 to 250+, and my blood pressure, they discovered in my most recent test actually flat lines, as well as see-sawing its way up to 228/170. I have to use a wheelchair on some days because I cannot stand up at all; but I only resort to it when I have no other choice.

One day in my second year I fainted in the street while out with friends. This became a frequent occurrence - I would feel the blood drain away from my face, lose my vision and crash to the floor. My GP sent me to a cardiologist who performed a tilttest. It was horrific; I thought I would die I felt so awful. But they gave me an answer about the faints - Vasovagal Syncope: blood pressure and pulse that dropped too readily on standing. I carried on fainting occasionally, but it never stopped me from doing anything. It wasn’t malignant, they said - just annoying. I dealt with it and carried on.

I can’t digest wheat or lactose properly anymore; I now suffer (very occasionally) from hemiplegic migraines, where my body goes numb down one side. I have Ehlers-Danlos syndrome too, which explains the aching joints I’ve had for as long as I can remember. Having answers like this is satisfying, but it reflects one way that my glass is half empty - those diagnoses do not bring a cure, although my health seems to go in cycles. I can be fine, just like I’ve never been ill, and then crash in real style.

Then in 2004 I got a flu virus, and began to faint on standing. It got bad, so I went home to rest for a while. I hadn’t even been on the train for an hour when I sparked out, and the other passengers said I stopped breathing and had no pulse. After I sent the paramedics away, I managed to get home and the fainting worsened. It was almost every time I stood. In the end, after the scepticism of various GPs I bought a blood pressure monitor to see for myself what was happening to me. I was sure my heart was racing, and I was proved right when my pulse jumped from 64 to 156 the first time I took a reading on standing. It was a terrible time; I snapped bones in my foot by fainting awkwardly and was covered in bruises from constantly falling.

POTS wont win - I Will

Personally, I think there are two responses to this kind of predicament. The first is the easiest - I could have lain in bed crying about the things I can’t do and the unfairness of it all. The second is much harder but I try to abide by it - I try never, ever to give in to the POTS, no matter what it does to me. I’m at Oxford University now, having secured an unconditional offer, studying a subject I love with some amazing academics. Life here has been a lot tougher than I ever

I still had no real answers from anyone; the Cardiologists told me that it was the Vasovagal

imagined; I’ve found myself in hospital 6 times in the last 6 weeks alone; and I never know what tomorrow will bring. I’ve had classes where I’ve given presentations lying on the floor with my legs up on the table! I’ve had days where I’ve had to read for essays while lying on a hospital trolley. There are days when I can’t focus, work well, or even move. But I won’t let go of my dreams. I will complete this degree like I did my St Andrews one - well. The POTS won’t win - I will. I may not be able to play hockey, go to the gym, or swim like I used to, but my brain sure is getting a fantastic workout!

diagnosis. You know your body better than anyone. Keep fighting for answers. And don’t ever think that POTS will stop you from living your life. It might alter when you do the things that matter; but keep pushing, and it won’t stop you from doing them. I am bigger than this condition and I refuse to let it define me. As Livy himself said, “Intelligence can leap the hurdles which nature has set before us.” by Kylie Murray Bristol

The crux of my story is this: do not accept the unacceptable. Had I listened to doctors before I found the UK’s only autonomic specialist, I would have believed I had M.E or some other inaccurate

YES, YOU CAN GO ON HOLIDAY!! In general, air travel does not pose great risks to most patients with cardiac problems. Research has found no evidence that air travel interferes with pacemakers or implantable defibrillators. It is always a good idea, however, to talk to your doctor to check if any pre-flight testing may be necessary. Do not forget to take adequate supplies of your prescribed medication and keep it in your hand luggage. Carry a copy of your medical history and phone numbers of your doctor and family. During the flight it is a good idea to wear compression stockings, pass on the alcohol and drink plenty of fluids to avoid dehydration, which has triggered many syncopal attacks on flights!

HOLIDAY INSURANCE When booking your holiday it is important to remember Insurance. If you have any difficulty in obtaining cover for any member of your family, then we do have the vasovagal attacks and arrhythmias are: names of companies that offer insurance CH FACILITIES - Tel. 0870 750 6711 for people with medical conditions. e-mail insure@chtravelcare.co.uk This is an extract from an e-mail that arMarks & Spencer - Tel. 0800 027 6171 rived in the STARS office last month: Ext 8236 “………I thought I would drop you a quick line to say that after TREMENDOUS I am of the view that it would be very problems obtaining travel insurance helpful to publish these insurers’ details I have at long last been successful! so other do not have the problems that I The two companies that will cover had…….to say the least!! ……”

Fundraising STARS PATRON RUNS A MARATHON Patron and Trustee of STARS, Dr William Whitehouse, a Paediatric Neurologist, is running the Robin Hood Marathon in aid of STARS. Dr Whitehouse has been involved with STARS since 1993 and many of you reading this will have met him. This is William’s first full marathon and he needs as much encouragement as possible so if anyone would like to sponsor him, then just click on :www.justgiving.com/wiliamwhitehouse

Please Sponsor Me.... Christopher Pelly (aged 67) is the father of Mandy Warren, one of STARS’ adult sufferers of RAS and each year spends a month cycling in Europe in aid of a charity. Previous trips have included Poole to John O’Groats & Orkney and 1500 miles from Paris to Venice. This year Chris is planning to travel 2000 miles around France in aid of STARS. Chris has a website on Justgiving.com if you would like to sponsor him http://www.justgiving.com/christopherpelly all donations very gratefully received!

STAR runner raises £100

Member Diane Hughes ran the Reading Half Marathon on 9 April and raised £100 for STARS. She had never run before and managed a very respectable 2 hours 39 minutes. Radio Berkshire was there and Diane and STARS were mentioned!! It was a great result as Diane originally was going to run with her husband but he had flu on the day. Well done, Diane!! Diane chose STARS as her charity because her son, James, suffers with RAS.

RAFFLE Congratulations to the winners of our recent raffle: • S Boxall • C Cameron • S E Coney • • V Hardy • • F Newnes • J Reid •

FUNDRAISING STARS! Thank you to the following people who have been raising funds for our favourite charity: P F Bennett, E A Beston, D Boyle, J Budden, R Danby, A P Goodhead, S Harrison, D J Hughes, T Jackson, J McDougall, Nat. West Mortgage Dept., C Reid 10

Arrhythmia Alliance Awareness Week 2006 AAAW 2006 is rapidly approaching – in the last newsletter we enclosed publicity material and a draft letter for your MP. Have you written yet? If not, please do so – we can use all the help we can get to demonstrate that arrhythmia services need to be improved and in particular the establishment of Rapid Access Blackout Clinics. You can help by sending a letter to your MP. Don’t know who your MP is? Contact us and we will let you know. There is no excuse!!

HEART RHYTHM CONGRESS 2006 Please put THURSDAY 21 SEPTEMBER in your diaries as this is the date that STARS will be hosting its ANNUAL CONFERENCE at the National Motor Cycle Museum which is next to the NEC in Birmingham. Many of you will have attended our previous conferences and will know that they are a wonderful opportunity to meet the medical professionals, listen to them and have the chance to ask questions. You will also be able to chat to your fellow sufferers and carers. It is a great day and should not be missed. Registration of £30 includes entry to the STARS meeting, lunch, tea and coffee. What a bargain. Register now at:

www.ukheartrhythm.org.uk or post your cheques/credit card details to STARS, PO Box 175, Stratford-upon-Avon, Warwickshire, CV37 8YD. We are all working hard to bring you the latest on syncope and RAS, so please support us by registering early so we can cater for numbers. If you have any questions please do not hesitate to contact Laura Newton on 01789 450564 11

Naomi

Before we flew home we were all given gifts and Swiss chocolates as a memento of our visit.

The tour finished with a lunch hosted by Peter Steinmann, Vice President CRDM when we were shown all the different types of pacemakers and were able to chat and ask questions.

Everyone from Medtronic made me feel so welcome. That evening we were taken up into the mountains for dinner – the view was amazing. We were warned that we would have a very busy day on Thursday and they were right. We were given an introduction by Geoff Morris and a slideshow about the history of pacemakers by Daniel Beach. Then on to the Cath Lab where Hartwig Retzlaff was waiting for us. We each had a turn on a human body dummy to insert leads to connect the pacemaker. Francesca and Daniel were the only ones who managed to get them in the right place. M. Francois Monory who is the Manufacturing Director of the Swiss operation give us a tour of the production facility and we saw all the different technology from where they made the pacemakers to how they stored them.

I was up at 4.30 on Wednesday morning as I had been invited by Medtronic to visit them in Switzerland and see where my mother’s pacemaker was made. I had never flown before so there was a feeling of real excitement but a few butterflies!

Geoff Morris, Regional Vice President, UK & Ireland, Medtronic Limited, started the day by welcoming us all to Medtronic; this was followed with a presentation by Geoff and Daniel Beach, Head of Communications, Medtronic Limited, on the history of the company. For me this was one of the surprising elements of the trip as we were told why the pacemaker had been made and who was to benefit from such technology. We are lead to believe from Doctors and the media that pacemakers are a treatment for the elderly patient but in fact the reason they were developed was to help children. It is ironic that in this country children are usually the last to benefit from such a treatment. Hartwig Retzlaff, Procedure Training Manager, CRDM Europe,

The aim of the visit was to learn how pacemakers work and how they are made; it was a gruelling two day visit that was to be both interesting and informative.

On the 1st June Naomi and I were lucky enough to be invited to Switzerland to visit the Medtronic Headquarters. We were both extremely excited and nervous, neither of us had been to Switzerland before, Naomi aged 14 had never flown and it had been 19 years since I had been on a plane.

Francesca Youth Helpline Support

Thank you Medtronic,

My trip to Switzerland gave me a real insight into what Medtronic do for their patients. I didn’t realise how much time, effort and research went into making and developing pacemakers. The experience has helped me understand exactly what pacemakers do and why people benefit from them. I think it will really help me with the Youth Helpline support that I’m currently involved with for STARS .

The experience was very informative and allowed me to appreciate exactly what is entailed when someone needs a pacemaker. I practised inserting guide wires into a dummy patient. This showed me how difficult the operation would be to do and explained why it takes the time it does - you certainly need a steady hand and a lot of patience.

During half term I was lucky enough to receive an invite from Medtronic to go to Switzerland. The invitation consisted of a day at Medtronic, being shown around the premises and being taught about the equipment used and what is involved with the whole pacemaker process.

Just before lunch we were given a tour of the factory and shown every stage of the manufacturing process of a pacemaker by Francois Monory, Sr.Manufacturing Director, Swiss Manufacturing Operation. It was amazing to see how clean and sterile the conditions have to be. The factory workers are dedicated and seem to have a passion for what they do. Before they begin their day they have to shower and dress in gowns with only their eyes visible. It was surreal watching them shuffling around in their green gowns not knowing what they looked like underneath!

followed the presentation by giving us a tour of the Cath Lab. This was a virtual reality lab where all the equipment was laid out for use as if in a real situation. It was here that we were allowed to have a go to see if we could perform a procedure using the equipment a Cardiologist would use. Naomi thoroughly enjoyed this; it took so much skill and concentration but, unfortunately for us, our patient did not fair well under our care. We only had one potential doctor in our group and that was Frances a who completed the procedure without causing the patient too much distress!

Julie Fe Fear, ar, Dorset

The day for me was a huge success and an experience I would not have missed for anything. I came away knowing more about pacemakers and filled with confidence by the whole manufacturing process. We were made to feel very welcome and, even though everyone we met was extremely important, there was no barrier between us. We were listened to and treated with the utmost respect. The trip for me was about understanding pacemakers and the work they do at Medtronic but for them it was learning about patient experiences and the things we endure.

To finish the day we were given a short presentation on the range of arrhythmias and the treatment options. Marina Izzo, Director Training & Education (CRDM) Europe told us about new technology and the variety and sophistication of the leads used in pacemakers today which will enhance some patients’ quality of life in the future.

I had a wonderful trip to Switzerland and I would like to thank Medtronic and STARS for giving me this amazing opportunity. Nicola McGillivray Glasgow

We had lunch with the President of Medtronic, a very kind gentleman called Michael de Mane who presented us with a gift in recognition of our visit. We managed a quick presentation on pacing – I learned that a battery lasts about 7 – 10 years, depending how often it is used! Then it was back to Geneva for the flight home.

The next morning we went to Medtronic’s headquarters for a presentation on the history of the company by Geoff Morris and Daniel Beach, telling us how and when pacemakers were invented. It was incredible to hear that they were actually first intended to be made for children and that the world’s first pacemaker was ‘outside the body’. After this we were taken on a tour of the Cath Lab where trainee doctors practise fitting pacemakers. It was set out like a real life operating theatre. Hartwig Retzlaff organised the tour and I had a go at fitting the pacemaker leads! We had a tour of the production facilities and I felt very privileged to have a pacemaker when I saw the amount of work and effort that is put into making them.

I was so pleased when a member of Medtronic was waiting for me at Geneva Airport together with Julie and Naomi Fear. Julie also has a pacemaker so knew exactly what I had been through and how I was feeling. Trudie and Francesca arrived and Medtronic took us all out to dinner at a restaurant with stunning views. I was so pleased to be able to share my experiences with our hosts, knowing it was this company that had helped give me a better quality of life.

I felt very special when I received my invitation from Medtronic to visit Switzerland and see where my pacemaker was made.

We also highlighted STARS and the fantastic work that is done by the charity. He was interested to learn about the support we receive and the fact that if it wasn’t for STARS some of us would not have received a diagnosis or treatment.

We were joined for lunch by Peter Steinmann, Vice President CRDM, Western Europe and he was so pleased to meet us and listen to our experiences. I found it very interesting to hear how differently patients with syncope are treated outside the UK and how things could be improved.

At 11.45 we were joined by Michael DeMane, President, Europe, Emerging Markets and Canada and Herb Riband, Vice President, Legal & External Affairs, International. It was in Michael DeMane’s office that we had our photos taken and were presented with a gift from Medtronic. Michael was very interested in our personal stories and was shocked to hear how we had been treated by areas of the medical profession but very happy that some of us had our lives greatly improved by a pacemaker.

STARS ST ARS members visit vis it pacemaker plant

a journey of self Paul Clements contacted us after seeing Trudie on television and offered his support by doing a sponsored bike ride from John O’Groats to Lands End. This is his diary of the journey. We think it is inspiring and a jolly good read! Thank you Paul. I cycled from John O’Groats leaving on the evening of Wednesday 24th May 2006 to cycle the 953 miles in 15 days and arrived at Land’s End on Thursday 8th June 2006. I did this to raise money for the charity that heightens awareness for people who suffer with the various types of Heart Rhythm Disorder as I have been a sufferer of this condition for over 10 years. Although a benign condition I have spent many years trying to accept the reduction in my quality of life brought about by reduced physical capability in ‘storm’ periods of AF (atrial fibrillation), but more significantly and more debilitating has been the mental illness that I have endured, anxiety at first then clinical depression in dealing with it all especially following failed ablation attempts. In 1995 I decided that I would prove to myself that I was capable of living a normal life. This journey was one of the plans hatched and it took me this length of time to find the time, space and confidence to undertake it. The journey through the north of Scotland was stunning, the coast incredibly clean and deserted. I was told that the proposed development of Dounreay power station was a causal factor in the amount of derelict, deserted properties. Although carrying my own kit and traveling solo, the hills of Scotland were no hardship, with the exception of Shuhie near Inverness. I had three days of driving rain, hail, occasional sun and felt like giving up a couple of times. I didn’t use my brakes going downhill for 3 days the wind was so strong! I had to reach deep into the reserves of resolve to keep going, at 75 miles per day being wet all the time was no joy. Lockerbie village was very tranquil. I diverted the route by a mile to go and see the memorial which I found very moving. It was very touching to see so many people of the same surname who died - perhaps they were on a family holiday when the plane was blown up. I am ashamed to say I didn’t recall the date it happened until I saw it was Dec 1988 when 271 were murdered. The town is such a small place, it is hard to imagine the scale of it. In England I had a day passing through rugby league towns, Orrell, Widnes, Runcorn, St Helens. Runcorn bridge was quite impressive, built by the same man who built Sydney Harbour bridge, I am informed. Just before the bridge I caught up with Bob, the Ender who I met in Carlisle on my rest day, so we cycled the next five miles or so together, which was handy as we got lost on Runcorn island and ended up on a very busy dual carraigeway for a couple of miles. Amazing how fast you can pedal when scared witless of big lorries! Poetic licence or destiny? I arrived in Chester safe and well, to meet a cyclist on the doorstep of the YHA who was just packing in the End to End as his heart rhythm disorder was playing him up! Needless to say we had a long chat and I found myself telling him my history and all about AA, the website, the helpline and after half an hour together he told me he felt positive about this news. Despite being a sufferer for some years, he knew nothing about the AA. I figured the chances of this meeting, by two people with the same condition to meet in such a way, both doing the same thing to be somewhat slim.

Dartmoor is a beautiful place to drive across but an absolute pig to cycle! It took me 4 hrs to cycle the 25 miles from Steps Bridge to Tavistock, where on recommendation I sampled some strong cheddar from a rather extensive cheese shop. Blue skies bring hot weather, surprisingly it was as much of a challenge to deal with as the wet and cold, just different ways of coping. One of which saw me fall asleep at the roadside on the A390 outside Liskeard! Dartmoor was without doubt the toughest day. Every hill is followed by another. The pleasure in going downhill fast is somewhat reduced by the thought that you are simply racing towards the next 1:5 uphill. Still, the land speed record was broken at 45 mph off Dartmoor and repeated in Cornwall. I arrived at Land’s End at just after 5pm on the last day, Thursday 8th June. The ride from St Austell was fast, the hills virtually disappeared. I joined the A30 near Redruth and breezed along to Hayle in no time. I was however, pedalling on a tide of emotion and adrenalin, no pain, just ecstasy!! I treated myself to moules et frites and a glass of dry white wine in Hayle for lunch. The ride into Penzance took no time, where I stopped off to buy an England shirt for the journey home, so I didn’t look out of place!! The A30 from Penzance to Land’s End reintroduced me to the hills, but only for 10 miles, the last 4 of which were down. When it came into view, I was just stunned. The enormity of the whole project just hit me and I would like to say it was the wind bringing a tear to the eye but I was wearing glasses! It was an eerie feeling, I got off the bike and was hit with a strange feeling of not knowing what do do next! Some tasks to perform, the photo, getting my form stamped in the hotel to prove finishing (so I can wear the tie!)could wait, I just wanted to savour the time and reflect on the journey and drink the champagne I had carried from Penzance! Well as luck would have it they remove the sign at 5pm, apparently as a theft prevention, but my before and after shots will look a bit odd and it spoilt the moment a bit, but not much! I spent two hours at Land’s End and it wasn’t enough! I think back to the Enders arriving at JOG as I was leaving and seeing the inner glow of satisfaction appearing on their smile, well I’ve got that too now! The journey was a journey in the normal sense but certainly a journey of self. I think I went to more places within myself than towns I visited. Thank you so very much for everyone who texted, emailed or left messages on my website, it has been a real boost at the low times on the journey and believe me, there were some! Paul Clements Hampshire You can donate to the charity and read about the event at www.clemjogle06.piczo.com

STOP PRESS! New Section to the Subscribers’ Area of www.stars.org.uk BLOG – the latest service to be offered to our subscribers by the

STARS Syncope/RAS Message Board You can join the group and meet other members online, swap stories, ask for advice and help, and realise that you are not alone. It is a great way to stay in touch and is something we have wanted to do for a long time. Do give it a go!

ATTENTION New Awareness Campaign to Promote Accurate Diagnosis of Blackouts As part of our continued efforts to raise awareness regarding blackouts and the need for accurate diagnosis, we are initiating a new awareness campaign. Part of the campaign will involve the development of articles for the national press, which highlight the impact that syncope can have on people’s lives and the importance that it is correctly diagnosed. One of the most effective ways for us to do this is to introduce journalists to real patients and their families, so that articles can be written in the papers about real life cases. We are looking for people who would be willing to share their experiences with the media. A first hand account of someone’s experiences can be one of the most influential ways of encouraging physicians and their patients to consider and explore all possible symptoms and causes to ensure a correct diagnosis. If you would like to be considered please call or email STARS Trudie@stars.org.uk

INDIVIDUAL CARE PLANS We keep being asked by Mums about care plans. An increasing number of schools are asking for them when parents first register their child. They are a requirement of the Special Education Needs Code of Practice and known as an ICP (Individual Care Plan). Many of you will be familiar with the Special Education Needs Co-ordinator (SENCO) who may ask for this to be drawn up between the parents and the carers. This care plan below was drawn up by one of our members, Fiona Anderson from Perthshire, when her daughter went to nursery school. It has proved very successful, ensuring the school is confident when Louise is with them and Fiona is happy that any attack will be dealt with in a calm and competent manner. (Thank you Fiona Fiona for sharing this with us - Ed)

CARE PLAN Care Plan

Louise Anderson

DOB 30th August 2004

Background: Louise has had seizures and absences since she was 5 months old. They have now been possible diagnosed as Reflex Anoxic Seizures. She is on no regular medication to control the seizures. Seizure Description: The sudden shock of pain (however slight), or indeed any unexpected stimuli, causes the heart 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 with arms and legs jerking. After 30 seconds or so the body relaxes and the heart restarts. Louise may remain unconscious for one or two minutes or for well over an hour. She can be very emotional after an attack. Louise often sleeps for 2-3 hours after an attack. The attacks appear to come in batches and are triggered by her health (cold, virus) and fatigue levels. Nursery Management Strategy: 1. During an episode, remain calm and talk reassuringly to Louise. She can be put in the recovery position or remain in an adults arms if her head is raised (to avoid possible choking) during the seizure. 2. During the ‘semi conscious state’, Louise prefers to be cuddled in but will sleep in a cot after this. She can sometimes take a little while to settle to sleep. 3. Inform parents and keep record. 4. Louise should not be excluded from any activity as she is s typical healthy child. When she gets older, she may require some advance warning (ie You will feel a bump at the end of slide) to help prepare her for a possible shock. 5. DON’T avoid disciplining Louise from fear of an attack. 6. If an attack happens, don’t blame yourself and don’t feel guilty. There are occasions when nothing could have avoided it happening.

Emergency EmergencyTreatment Treatment If have a seizure lasting more thanthan 3 minutes, call call the the If for for any anyreason reasonLouise Louisecontinues continuestoto have a seizure lasting more 3 minutes, ambulance 999 staff. is highly unlikely to ever happen. ambulanceand andtake takeadvice advicefrom fromthe the 911 staff.This This is highly unlikely to ever happen

(Headteacher) Signed ………………………………………………. (Hummingbird) ………………………………………………. (Parent) Date…………………………………………….

I want a better life for our Son!

I would like to begin by thanking STARS and Trudie Lobban for allowing me to share my experience with you. You are all aware of the life-changing effects of Reflex Asystolic Syncope. In telling you my experience with my son Joel, I hope that it will give you assurance that others are going through what you are going through and how STARS has helped me.

progress, because now there was an explanation of why our son was blacking-out. However, I was reassured that Joel would grow out of RAS by the time he would be three years of age. Joel continued to have one to two RAS attacks weekly until August 2001 and then there was a period from August until December were he had only 1 per month and he eventually had the longest gap of all - 6 weeks between RAS. We were very relieved that Joel’s blackouts were reducing. He had just had his second birthday, the situation was improving, and he seemed to be growing out of them. We longed for him to have his third birthday. Luckily, throughout all this horrible time I was in contact with Trudie via email, and getting information and support.

Joel was born on the 7/7/99 and is now 6 years old. He is the middle child of 3. Joel was 5 months old when he had his first seizure. It occurred in a relatively normal situation. I had lifted him out of the bath and, on placing him on the bed, he went rigid for a few seconds, and then went floppy. It was a huge shock to me, but I now realize that this was caused by the apparent shock of Joel coming out of a warm bath into the cooler air. Despite my original fears, I thought that as he looked and recovered well, I would wait and see if there were any other signs of illness or any reoccurrence before raising alarms about Joel’s health. The next RAS occurred a few weeks later on Christmas Eve. I had left him with my parents and sister to go to the shop. When I arrived back home, it was immediately apparent that something was amiss when I was presented with three sets of tearful eyes and claims that Joel had woken and when his granny had looked at him he had ‘died’ on them. This was very distressing for all, but again I thought there was no immediate panic, but that I would contact the health professionals. A few months later, in early March, a pediatrician reviewed Joel for a heart murmur and this was when the diagnosis of RAS was made. Joel was then 8 months old. I was assured that Joel would grow out of this at 18 months and he was discharged.

However, this happy situation was not to last. From January 2002, Joel experienced a difficult time. His RAS became more frequent, occurring once or twice a

month. He has further associated problems, such as incontinence of urine during a RAS, and on two occasions we found him lying on the floor for no apparent reason. I sought reassurance from Trudie that this was connected to the RAS, since we were now worried about epilepsy.

The RAS attacks continued. They occurred every week to three weeks, including when he had any invasive treatments such as vaccinations. When Joel was about 15 months I found STARS on the Internet. I joined the STARS group and was then in touch with Trudie. This has become my lifeline.

At this time it became apparent that Joel required a tonsillectomy. He was booked in May to have the surgery and although the consultant knew about the RAS and supposed that this would not cause a problem for himself or the anaesthetist, however, on admission to hospital the anaesthetist expressed concerns about the frequency of the RAS and decided to speak with the consultant. The conclusions were that the hospital did not have the required cardiac medical team to deal with Joel if something untoward happened and the nursing staff felt they had little knowledge of the condition and were not confident about caring for him. We accepted this as we certainly would not be putting Joel’s life at risk and agreed to attend another hospital that had a specialist paediatric resuscitation team the following week. Joel had two doses of atropine prior to surgery, as one dose did not raise his heart rate sufficiently. His surgery was uneventful and he remained asleep for two hours and he had continuous heart monitoring, which the anaesthetist said showed he had a slow pulse rate.

At 18 months (the age he was supposed to stop having RAS) Joel had 10 days when he was having 2-3 attacks of RAS per day! During an episode Joel often received a secondary injury, however, unlike other sufferers, Joel has never slept after a RAS. Obviously, at this stage I became very concerned about Joel’s health and development. I shared my concerns with my GP and he referred Joel to another pediatrician. This consultant confirmed the diagnoses of RAS, and recommended that Joel be referred to a pediatric cardiologist in Belfast for his opinion. In March 2001, the diagnosis of RAS was made again, and confirmation of an innocent murmur. We were given a 24-hour monitor to record seizures but his episodes are very sporadic, and not surprisingly, he didn’t have an RAS during a 24hour monitor!! Then we were given an event recorder and we were fascinated by the technology. We recorded 2 seizures and transferred the recordings via telephone to the cardiology laboratory. Joel’s heart had stopped beating for 4 and 11 seconds. This was real

Joel was never pain free from his surgery and 13 days

after his surgery he was taken to the GP because there was some blood in his mouth. Whilst at the GP surgery he had a massive haemorrhage and was rushed to the local hospital where he was almost unconscious on arrival. While in casualty I had to keep reminding the doctors of the RAS especially as he was to have further surgery. The first anaesthetist had little knowledge of RAS and he got another anaesthetist to attend to him. I was so worried that while the doctors where putting up the IV fluids and using many needles that Joel would suffer RAS during these procedures. However, thankfully he didn’t and within 15 minutes of arriving at the hospital Joel was having his 2nd operation in as many weeks. He lost a lot of blood and after surgery his haemoglobin was 7.2-half what it should have been. He was a lucky boy- he nearly died. He was discharged 4 days later, pale and weak but alive. He was only home 2 hours when he had a RAS. I really was scared. My main concern was the already low blood count and if this would result in oxygen starvation of the brain. I phoned the consultant and he saw Joel the next day. I explained that the RAS were again more frequent about 2 – 3 per month and Joel was now being excluded from activities with his peers.

Joel is an active and adventurous 6 year old, who loves rugby and other sports and he is the age where he wants to join in such activities. We are now striking the balance between keeping him safe and allowing him space to grow up. Our hope is that his most recent attack will be his last and that Joel will grow up enjoying all the things that little boys should enjoy. As you can see RAS has impacted on Joel’s health, social and educational development, as well as family life as a whole. He continues to have RAS and near misses on a weekly basis. I want a better life for our son. Since Trudie and STARS have been so supportive, it was only right that I should raise some money. So I sold the ballot tickets. The response to the ticket selling has been amazing! Everyone is so interested in the condition and has been so generous with their money. GP’s, colleagues have mentioned people who have had similar episodes which could probably have been RAS, in fact one GP now believes her younger brother may have had RAS as she remembers carrying her brother who was limp at the time outside to her mother, after either a shock or injury. Joel has been a constant worry to us but the burden has been shared by the support given by others. I would like to thank Joel’s doctors, family and friends and last but not least Trudie and the STARS group.

In addition, Joel was also receiving a lot of secondary injuries during these episodes. It was affecting family life as family and friends were understandably reluctant to look after Joel. Another event recording showed Joel’s heart had stopped beating for 12 seconds. We were referred to a neurologist at the end of June 2002, who suggested trying Joel on atropine to prevent the RAS. Atropine is a drug that can block the effect of a nerve on the slowing of the heart.

By Cathrine Reid STARS Trustee

My name is Cathrine Reid, I was born in Chatham, Kent and returned to N. Ireland when I was 2 years old. I am the eledest of 4 girls. I have 3 children, Aaron (9), Joel (6) and Ellen (4). As as family we live in the town of Banbridge Co. Down.

Since starting atropine he has had long breaks from RAS of between 1–3 months. However, he has had numerous near misses, approximately 1–3 per day. This has included dropping of the jaw and rolling of the eyes in conjunction with grey pallor and unsteadiness but followed by recovery so we know the atropine is preventing a full RAS. My greater concern has always been that Joel would suffer a serious secondary injury during an RAS. He recently sustained a head injury and bruising down the left side of his body when he had a seizure whilst standing upon steps and falling onto concrete.

I am a registerd general nurse, registered psychiatric nurse, and registered health vistior. After working as a nurse, I entered Health Visiting and worked for 11 years, before moving into an adivsory capacity for a regianl IT system for community helath and social service professionals.

Joel was unable to use any protective mechanisms during the fall, which we all saw, as he was unconscious. The attack itself was triggered by being accidentally hit on the face with a football. Recently one weekend he had two seizures within two hours, both triggered by injuries sustained during play, both resulting in him falling again and banging his head. His siblings witness these seizures and this impacts on them. The atropine has changed Joel’s life. He is now able to play rough and tumble with the other kids without me scooping him up and taking him away. When he falls I now don’t worry as much that it will lead to a RAS. We have even taken him to the swimming pool, which he loves. Joel has regular medical reviews and is now in school, receiving extra supervision to maintain his safety, which is now being reviewed in preparation of him entering primary school.

I became involved with STARS about 5 years ago, following my son Joel being diagnosed as suffering Reflex Anoxic Seizures. Since then I have worked as a volunteer in Northern Ireland and was appointed as a Trustee for STARS in November 2005.

Keeping in Touch We love to hear from old friends. This is a letter we received recently from a member who lives in Hong Kong. Her daughter is now twelve years old and the RAS attacks are long forgotten! Great news!!

Hi Trudie How are you? After reading the STARS magazine I see the charity has gone from strength to strength. Thank you for helping me over the years. Sara stopped having RAS when she was about 4-5 years old. Please keep me informed on how you are doing over the internet. It was very scary when we first found out that she was passing out, she would go floppy and her eyes would roll up. I took her to the doctor here and they said it was a breath holding disorder. I was not convinced and she went for further tests – MRI and she was also tested to see if she had epilepsy (EEG). The doctors decided she had epilepsy. I was still not convinced she had epilepsy. That is when I went on the internet and found your site. All the symptoms seemed to suggest RAS. With this information I went to my doctor and he agreed that it looked the same as the symptoms Sara was having. The hospital doctors then did a simulated ocular compression and checked her heart beat. The test made Sara’s heart stop and her head and eyes rolled back. The doctors recorded this on video so they could use it for teaching purposes. Apparently this was one of the only cases they had seen in Hong Kong, as this is thought to be only linked to Caucasians. This all happened when Sara was 2 years old. Luckily she did not have to go on any medication and she grew out of it when she was about 4 years old. Thank you again for all your support and I am so pleased she was diagnosed correctly. Also in hindsight I was wondering if one of the attacks happened when she was first born. I was induced for the birth. The birth went smoothly. About a couple of hours after she was born I thought something was terribly wrong. It looked liked she had stopped breathing. I rushed her to the nurse, but by the time I got there, she was fine. I think this might have been the first attack. Thank you again for your help over the years and now Sara is a very healthy 12 year old and cannot remember any of the attacks. Thank you Gill

Gill Devereux Devereux - Hong Kong

STARS’ ST ARS’ PRINTERS NOMINATED FOR TOP AWARD Congratulations to Alex Graham and his team at Prontaprint for being runners up in the top Prontaprint Award for the best of the best in the Prontaprint Network!! Alex has been with us and grown with us from our days of ‘black and white’ literature to our current glossy leaflets and colourful newsletters. ‘Stop the press’ are words he dreads, but he never gets cross and keeps smiling! Recently Alex’s father was suffering unexplained blackouts and it was our turn to sort out his problems’. Doctors were talking about epilepsy but with Trudie’s advice and help his father is now the proud wearer of a pacemaker. Alex has recently opened a fully equipped print unit to compliment his full Digital Centre with the latest in colour technology and this newsletter will be one of the first publications off the press! Thank you Alex, Kim and Ross for playing such an important part in the success of STARS.

Dear Trudie……. LAVATORY BREAK

This is about me when I have an RAS attack. My name is Chloe. I can remember when I was in school I banged my elbow on the table. I was seven years old then. It all started when I was one. They were saying it was Breathholding attacks right up to when I was seven years old and I banged my elbow. I felt like Mrs Sloan was spinning me around. Sometimes when I have an RAS attack it scares me because the people I last saw before the attack keep on flashing in front of me. Sometimes I see tunnels and a light. Now I am nine. I have been brave enough to try Judo, football, a sports club, and now I go swimming. But I am worried in case I have an RAS attack in any of these activities. I have been hit with the football. I cried once, but the other three times I didn’t because Megan was telling me not to cry and taking my mind off the pain.

Q. Recently I have collapsed twice in the middle of the night while standing at the toilet emptying my bladder. My doctor said it sounded like Mictruition Syncope. I’m told this is not a serious condition, but potentially quite dangerous to me. A. Micturition Syncope - fainting while you are having a pee - is caused by a sudden drop in blood pressure that occurs while your bladder is emptying. It is surprisingly common among middle-aged men. When you get out of a warm bed, your circulatory system is in a relaxed state. As you stand your blood pressure is unable to readjust itself quickly enough to maintain a steady supply of blood to the brain. This, in combination with the physiological effect of a bladder contraction, causes you to become dizzy and lose consciousness. Women are not affect by this because the empty their bladders in the sitting position. I would recommend that you follow their example in the middle of the night.

Chloe Ryder Liverpool

USEFUL TIP If anyone needs an instant translation why not try the following website! Will translate anything from Russian to Korean. http://babelfish.altavista.com

On Tuesday 13 June I attended a Patient Group Media Training Seminar which was organised by the Medical Technology Group. We were taught how to work with the press to our advantage and how to present our story to them in a newsworthy way in 15 seconds. If anyone has news to circulate then I will now be working with the Medical Technology Group to write and place the story. Help us to help you raise awareness Matt Ayres Fundraising Officer, STARS 21

SURFING THE WEB GETTING THE BEST TREATMENT? BestTreatments is an online health website for patients, which is published by the British Medical Journal (BMJ), one of the world’s most trusted and authoritative providers of medical information. It tells patients which treatments work and which do not, based on the best and most up-to-date research evidence. It is well written in simple language and it aims to:• Help patients understand their condition • Answer their questions about the benefits and risks of treatments • Use the information to work with their doctor in deciding the treatment that is right for them.

Amazon-type rankings come to the NHS at www.patientopinion.org.uk

Patients themselves have helped to create Best Treatments website and regularly review the material to make sure it is answering their questions and addressing their concerns. Why not have a look at www.besttreatments.co.uk

There’s lots of official information about the NHS available on the Internet – which Trust got 2-stars and – if you’re persistent and have a mind like a ferret – what the MRSA infection rate is. What people often want is to find out what other patients thought of local services. If I’ve got to go and see someone about my (diabetes) then it would be nice to know how previous patients with diabetes rated the service at a particular hospital. After all you can go on the ‘net nowadays and read how people rated their holiday or their camera. Why not the NHS? Patient Opinion is a new website – www.patientopinion.org.uk - where you can do just that. Patients can share the story of what happened to them at a particular hospital or you can rate a service and see what others thought of it. Patient Opinion now covers all hospitals in England and, from March, will have been able to accept stories and rating of many private sector providers and mental health services as well.

SURGERY TACTICS “Choose and book” Good news! In the past, when a doctor referred you to a specialist, you went home and waited and waited for the hospital to send you a date in the post. However, times have changed – for the better. The “choose and book” system means that once your GP has given you a reference number, you contact the hospital and arrange your own appointment. You must remember, however, that the majority of hospital clinics are held during standard ofﬁce hours and perhaps only once a week so there is no guarantee that you will get the exact day and time you want. Your GP should give you a choice of at least four different hospitals. These will be geographically fairly close but within a few years you will be able to choose any hospital in the country. You can always ask your doctor which hospital he would suggest for your particular problem but if you want more information, then visit

www.chooseandbook.nhs.uk

Patient Opinion is free to use and is run on a not-forprofit basis. It aims to make the collective wisdom of patients available to other patients and to the NHS. So go and log on now a www.patientopinion.org.uk. If you have not got access to the internet but still want to share your story, telephone 0845 113 0012 and tell us what happened to you or someone you care for. After all, this is our NHS – let’s make it better!!

Note from the Editor Of course, the best sites of all are STARS - www.stars.org.uk AA - www.arrhythmiaalliance.org.uk Here you will find a wealth of information and advice. Have a look!!

WE NEED YOUR SUPPORT STARS have signed up to everyclick.com, so help us raise money for STARS just by searching the web!

www.everyclick.com is an internet search engine with a big difference it donates half its revenues to charity.

Recycle Your Old Mobiles to Help sTARS

We are sure that there are many www.everyclick.com.uk.starssyncopetrustandreflexanoxicseizures of you who have old mobile phones lying around at home. your home page and make sure you use it whenever Just make

you search the web! It does not cost us, or you a penny so please use it to support STARS Syncope Trust And Reflex Anoxic Seizures.

5th VOLUNTEERS’ TRAINING DAY

You can now recycle these in aid of STARS. Contact Matt by e-mail at matt@stars.org.uk or for details, or telephone 01789 450564

PUT YOUR HEART INTO THE WEB The British Heart Foundation (BHF) has plans for a new teen website.

The next Volunteers’ Training Day will be towards the end of October /beginning of November. If anyone is interested in attending (it will be on a Saturday) then please e-mail Carole Ellis, Project and Volunteer Co-ordinator on volunteer@stars.org.uk

You’ve got the ideas and the experience and they are listening. If you’re 13 - 17 years old and want to be part of a new website project, join their focus group. To find our more email

New volunteers are always welcome.

allend@bhf.org.uk

CALLING ALL ADRENALINE JUNKIES! We need as many fearless supporters as possible to take to the skies and jump! We have established a partnership with Skyline Professional Events Organisers, who run a selection of skydives. We urgently need to raise awareness and funds and what better way of doing so than reaching for the stars and coming back down to earth. If you are interested in jumping 10,000ft out of a plane to support STARS you can find details on their website www.skylineparachuting.co.uk. For information packs and sponsorship forms please email me with your name and address at matt@stars.org.uk. Happy Jumping!!!

SUBSCRIPTIONS AND DONATIONS Your subscriptions are what keep STARS up and running. Please renew your subscription to STARS for 2006. Subscriptions are a minimum of £15/$25/€25 a year. Without your subscriptions STARS could not provide the vital services that help thousands of people in need of support and advice. It is so important that you remember to renew your subscription this January. Thank you. Name: Email: Address & Post/Zip Code Telephone: I would like to make a donation to STARS and enclose:

£/$/€

OR I have made a donation to STARS via PAYPAL at www.stars.org.uk to the sum of:

£/$/€

OR I have made a donation to STARS via my CAF account to the sum of:

£/$/€

I would like to RENEW my subscription to STARS and enclose (min of £15/$25/€25)

£/$/€

I have renewed my subscription via PAYPAL at www.stars.org.uk. to the sum of:

£/$/€

I have arranged a monthly standing order to STARS of: (min £2 ). (see form below)

£/$/€

I have arranged an annual standing order to STARS of (min £15). (form below)

£/$/€

STANDING ORDER AUTHORITY My Bank

GIFT AID DECLARATION

Bank Address:

Name of taxpayer: Address:

Please Pay: Postcode:

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

Please fill in Gift Aid Declaration to allow STARS to claim an extra 28p for every £1 you donate, at no cost to you. I want STARS to treat all donations I have made since 6 April 2000, and all donations I make from the date of this declaration until I notify you otherwise, as Gift Aid donations. I currently pay an amount of income tax and/or capital gains tax at least equal to the tax that STARS reclaims on my donations in the tax year (currently 28p for each £). I may cancel this declaration at any time by notifying STARS. I will notify STARS if I change my name or address. Please note full details of Gift Aid tax relief are available from your local tax office in leaflet IR 65. If you pay tax at the higher rate you can claim further tax relief in your Self-Assessment tax return.

/2006

Month / Year ( delete)

My Account No: My Sort Code My Signature

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

Date Please print and fill out this form and hand to your bank or building society. Thank you