The Blackouts Trust JANUARY 2009 : ISSUE 30 WORKING TOGETHER WITH INDIVIDUALS, FAMILIES AND MEDICAL PROFESSIONALS TO OFFER SUPPORT AND INFORMATION ON SYNCOPE AND REFLEX ANOXIC SEIZURES

Or, what about your leisure centre? Libraries always Dear Friends of STARS welcome leafl ets - we can provide these! Last year many of you helped raise much needed If you really want to spread the word and raise funds for STARS during the Arrhythmia money, what about a coffee Awareness Week (AAAW) by launching morning or afternoon tea? eco-friendly STARS balloons – who can Invite your friends and offer forget the cover of the last newsletter! them STARS literature and wwwwww.stars.or.stars.org STARS needs your help again!! We are g.uk.uk persuade them to pass this playing a major part in this year’s Have you ever fainted? on to their own medical AAAW (8th – 14th June) with the theme centres, libraries or clubs. ’Know Your Pulse’. We will be raising However you want to awareness of the pulse as a tool to be involved, STARS can identify potential arrhythmias including provide FREE materials for all syncope and ensuring that STARS is events. Please write or email the charity to contact should you have Do you know why? us with details of your plans so a blackout/loss of consciousness. To find out more about fainting, blackouts, that we can support your idea. We have included a new STARS and unexplained loss of c Pippa at [email protected] onsciousness will be delighted to hear from poster and we urge you to display it contact STARS now… [email protected] you! Please do not forget to in a public place which would further .uk www.stars.org .uk our cause – a shop, a club, a library, take PHOTOGRAPHS of your The Hea rt Rhythm Charity www.heartrhythm charity.org.uk Tel: 0178 Affi liated to Arrhythmia Alliance 9 450564 www.heartrhythmcharity en event – I want to be able to GP’s surgery or a college notice board. .org.uk dorsed by Working together with individuals, do another happy cover for support and informati families and medical professio on on Syncope and Re nals to offer flex Anoxic Seizure Registered Charity No. 10848 s our summer newsletter, as well Many of you are parents of school 98 children – why not approach your child’s as say a big thank you to school and hold an awareness assembly, focussing on everyone!! ‘Knowing Your Pulse’, encouraging I know you will all rise to the the pupils to ‘Chart Your Heart’ STARS FUNDRAISING for the week – we will have great challenge and raise awareness of Pulse Check cards to give away for RAFFLE RAS, SYNCOPE and POTS. this event. Please will you support STARS by selling the If you have younger children you enclosed raffl e rickets? TTrudierudie may prefer to raise awareness and Ask your family and friends fundraise with a teddy bears’ picnic to buy a ticket and be in with (don’t forget the STARS teddy), hold a chance of winning a bake sale or wear red for the day. £100, £75 or £50. To use a well known quotation With school days a thing of the past, “You have to be in it to win it!” are you a patient or carer who might Closing date for the raffl e is consider ‘Adopting a Surgery’ by 15th May 2009. presenting them with a poster? . Winners will be announced Your local shop is always willing to 20th May 2009. put something in the window.

Patrons: Prof. John STEPHENSON, Dr William WHITEHOUSE, Prof. Christopher MATHIAS, Prof. Rose Anne KENNY, Dr Adam FITZPATRICK, Dr Wouter WIELING, Sir Roger MOORE, TWIGGY Lawson, John BURTON RACE, Sir Elton JOHN Registered Charity No: 1084898 IMPORTANT DATES FOR 2009 Invitation to STARS members to meet up at the 2009 Arrhythmia Alliance Regional Meetings

STARS will be at the regional meetings this year and we think it is a great opportunity for you to meet other members in your region. Come for coffee as our guests, but if you would like to stay for a hot lunch and join in some of the afternoon sessions, then you may for just £13.50. Medical professionals from your region will attend, including doctors, GPs and specialist nurses. The agenda will cover a broad spectrum and there is the opportunity for you to be involved with regional issues. Please email [email protected] in the fi rst instance to register your interest and more information will be sent nearer the date. ♥ A-A Regional Meeting Dates – Is there one in your area? Midlands -Ettington Park Hotel, - 19th March 2009 Stratford upon Avon London - Novotel London West, - 25th March 2009 Hammersmith South West - Hilton Bristol - 15th April 2009 North West - Manchester - 29th April 2009 Scotland - Edinburgh - 11th June 2009 North - Leeds - 12th June 2009 South - Southampton - 17th June 2009 th Wales - Barceló Cardiff Angel - 10 September 2009 Ireland - Belfast - Date TBC

Email [email protected] STARS or visit www.heartrhythmcharity.org.uk Patient Day 2009 to register. Sunday 18th October

(A day when the sessions are presented for our members only and when there will be an opportunity to speak with the doctors after the presentations) This year, STARS Patient Day will be held on Sunday 18th October at the Hilton Birmingham Metropole (by the NEC). We are hoping to obtain fi nancial support that will enable us to offer a reduced registration cost for STARS members. This offer will only apply to those members who register directly through STARS at [email protected]. When making contact please state that you are a STARS member to ensure you receive your discount. Last year, a large number of STARS patients attended and said how much they enjoyed the day and appreciated the diversity of topics and the opportunity to talk with other members. One of our younger members who attended for the fi rst time was prompted to write her story….

01789 450564 www.stars.org.uk [email protected]

2 So much to learn at a STARS Patient Day as having Refl ex Syncope in real insight into just how much January 2006 and started taking research and work is being midodrine. done on syncope and POTS. I have encountered many people ““II ccouldn’touldn’t hhaveave bbeeneen who cannot deal with me fainting and have had many discussions mmoreore rrelaxed!”elaxed!” with the university about it. Now, four years later I am doing really well with my work. I have changed The brilliant people at STARS medication and haven’t fainted for and the medical professionals a month. My boyfriend Philip, and answered many questions from my family and friends continue patients and everyone left with am Hannah and I am 22 to support me all the way; my a smile. I will be attending next i years old. Back in 2004 I was university are very supportive year’s conference and would told I was going to be also, and help me out any way encourage anyone to go along, an Auntie and this was supposed they can. I have even decided to if only to meet others in the to be one of the best days of my write my university dissertation same situation and with the same life but, low and behold, refl ex on whether young people with condition. I would just like to thank syncope appeared in my life. From syncope should be given support STARS for letting me know about that day on I began to faint about to assist their education, which the conference and I will hopefully three or four times a week and I I am currently working on. STARS see you all this year. constantly injured myself in the have been a huge help and I process. When my beautiful niece cannot thank them enough. Hannah Nicholson eventually came into the world I Manchester had fainted many times, but one So when the chance came up for day someone mentioned STARS. me to meet others in my situation Over 2600 people attended the I quickly got in contact with at the STARS Patient day, last Heart Rhythm Congress 2008, them and they sent me loads of October, I got myself a ticket. including medical professionals, information on syncope. This made patients and carers and other me realise that I can still carry charities. Now, in its fourth year, on with things. this annual conference has become one of considerable “ A rrealeal iinsightnsight intointo justjust howhow mmuchuch rresearchesearch magnitude and we feel that the time has now arrived for our own aandnd wworkork iiss bbeingeing donedone oonn ssyncopeyncope members to have an exclusive patients day (how it was many aandnd PPOTS.”OTS.” years ago before we became part of the International Heart Rhythm Congress!). In September 2005, whilst I was Leaving my house at 6am to go to still having tests and trying to fi nd Birmingham was the most exciting Please, therefore, put this date, a diagnosis, I was due to start at trip I have taken. When I arrived Sunday 18th October 2009, in the University of Worcester, 200 there were lots of people and I was your diaries and support us in miles away from my family and slightly nervous, but after receiving this decision. We will still have friends. I moved into halls of my delegate badge and bag with top class doctors and medical residence on campus a couple information in it, I couldn’t have professionals presenting the sessions and they will be available of weeks later, still fainting for no been more relaxed. I was lucky to answer any questions you may apparent reason. Luckily for me, enough to meet Rebecca Smith have. If there is a particular topic my family and my niece Sophie from STARS US and during the you would like to see covered, were constantly on the phone presentation I found myself taking please email [email protected] reassuring me and the university a lot of notes and getting carried as soon as possible so we are was helpful and supported me too. away. The speakers were fantastic able to book the best speakers I struggled a lot to deal with the and everything was easy to for the sessions. fainting, but was then diagnosed understand and it gave me a

01789 450564 www.stars.org.uk [email protected]

3 Registered Charity No. 1084898 ©2008 li FalFalling

isis notnot anan ageage oldold problemproblem

STARS is delighted to announce the ‘Syncope and Falls in the Elderly’ project (SaFE)

Why is there a need for the older persons are poorly managed prescribed to elderly patients. SaFE project? and investigated. Fortunately, we took her to a GP who gave us a second opinion Syncope (fainting) is a signifi cant One carer, Chris Harmer, and prescribed a less severe cause of falls among older adults. contacting STARS recalled - medication.” Falls and blackouts are very common with advancing age, “In her early eighties, my mother Chris’s story is a prime example and together they are one of started to have “funny turns” when of a case where syncope has been the most common reasons for she became giddy and unsteady on poorly managed. adults over the age of 65 to her feet. She was given Stemetil, attend accident and emergency which is often used to treat vertigo. What will STARS achieve? (A&E). Things did not improve. Her doctor doubled the dose to the maximum STARS is embarking on a new As quoted by Professor Rose adult dose. She became more ill, project which aims to promote Anne Kenny, Head of Department anxious, and felt awful. Her GP accurate diagnosis and treatment of Medical Gerontology, Trinity realised instantly what had of syncope and raise awareness College, Patron and Trustee of happened and took her off the of its link to falls in the elderly. STARS, “The consequences of Stemetil, but she was never quite If more people are made aware of syncope have a greater impact back to her old self. on older compared with younger the link between syncope (blackouts) and falls, the root individuals. There is a greater risk “Another problem was losing cause could be treated and of serious injury and fractures, consciousness in the newsagents recurring falls prevented. We will increased rates of hospitalisation, and at the hairdressers. She was be developing literature specifi cally loss of confi dence and reduction of ambulanced to A&E on several providing information, support, independence.” occasions. The Geriatrician started and advice on syncope in older a range of tests and, following adults. Syncope is estimated to account visits to cardiology, put her straight for 10-20% of attendees to casualty on very strong medication to treat We aim to raise awareness of who have suffered injurious falls. an arrhythmia. No other anti- SaFE amongst older adults, their However, despite the prevalence arrhythmic medication had been families, care home workers of syncope in older adults, it is tried fi rst and this particular drug and healthcare professionals. often the case that blackouts in carried a warning against being

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4 Why does syncope pose a What has STARS discovered of medical professionals with an major challenge for diagnosis so far? interest in falls prevention in the in older adults? elderly. STARS was received Over the last few months STARS enthusiastically by physio- 1. Older adults may fall because has made contact with health- therapists, occupational therapists, of syncope (transient loss of care professionals all over the UK, nurses and consultants who all consciousness), however they asking for their specialist support agreed there is a need to raise may be unable to recall having and advice. Thank you to all those awareness of the link between lost consciousness because who have contributed to our syncope and falls in older adults. of retrograde amnesia (an new project. individual who loses memory In October, STARS highlighted for the time period just prior to STARS has produced surveys to the Syncope and Falls in the the injury). As a consequence, help establish the current level Elderly (SaFE) project at the a large number of blackouts of awareness (amongst medical annual Heart Rhythm Congress will be recalled as falls, resulting professionals and patients) on the www.heartrhythmcongress.com in some older people never link between syncope and falls in during the Syncope Symposium. receiving the proper heart, blood older adults. Completed surveys The conference proved a great pressure and nervous system are coming in as we speak and we place to discuss the project with assessments for blackouts. are collating results. In addition, medical professionals who have a specialist interest in syncope. 2. Falls are often seen as part of we are currently assessing the the process of growing old. level of interest from a range of We have been gathering your This is incorrect. ‘Falling is care homes on the provision of views on what you would like not an age old problem’. Falls support and information on to see available for older adults and blackouts should be syncope in older people. Results experiencing syncope. I would like investigated carefully and so far highlight the desire to know to say thank you to healthcare similarly to other age groups. more and we hope to introduce professionals, patients and care support, information and advice home staff who have contributed. 3. Fear. Older adults may worry to care homes in the near future. about going to a GP or to If you are interested in our casualty for fear of losing In September, STARS made its SaFE initiative please complete their independence after a fi rst appearance at the annual our patient survey on line. Or fall. If the root cause of a fall International Falls and Postural phone STARS for a survey to is diagnosed it can be treated Stability Conference, in York. The be sent. Your feedback is vital and further falls prevented. audience consisted of a range towards the progression of SaFE

KEY FACTS Syncope is a significant cause of falls among the elderly.

Syncope is estimated to have a prevalence of between 10-20% in A&E attendees who have had falls which have caused injury.

Each year between 35% of adults aged 65 and over and 45% of adults aged 80 and over We want your perspective. have a syncopal event. At least Please contact STARS if you know 10% of syncopal events result anyone who has fallen following loss of in fractures. consciousness. Or send your experiences and views to STARS for the attention of Syncope and falls are the most Pippa or email [email protected] common reason for older adults We look forward to the launch of new to attend the accident and emergency department. educational literature for SaFE in 2009.

01789 450564 www.stars.org.uk [email protected]

5 “A Job” is infinitely better than “No Job” with the loss of my interview. Many of the application driving licence, came forms asked for information about the loss of my job. disabilities; I cannot prove anything District nurses can’t about why I was not selected for travel to many patients interview, but received no feedback without a car! In when I requested it. The longer I retrospect, this was was off sick, the more I started to the push I needed to lose confi dence in myself and my accept that, driving abilities. I also felt my choices were licence issue aside; now hugely limited by my disability. my nursing role was untenable in my I tried to stay as healthy as possible, current state of health. physically and mentally, and so I made myself go for a short walk I continued to keep every day. I tried hypnotherapy, in contact with my relaxation techniques and private line manager at the therapy. I was lucky to have amazing Anita Kiernan Primary Care Trust support from my husband, friends and she followed and family. I logged on to the procedure while we STARS message board every day used to be a community waited a frustratingly and found huge comfort in knowing iI nurse. In September 2007, long time for Occupational Health others understood my worries and following deterioration in my and cardiologist reports. It was could help answer my questions. long-term health condition (then quite clear that we were now in treated as “postural hypotension the realms of re-deployment. By In January 08 I fi nally managed and benign sinus tachycardia”); law, the employer has to try to offer to have a meeting with my I had another collapse at work an alternative role, if there is one line manager and an HR and was sent home until I could see the Occupational Health ““TheThe llongeronger I wwasas ooffff ssick,ick, tthehe mmoreore I team. This was the beginning of sstartedtarted ttoo lloseose cconfidenceonfidence iinn mmyselfyself the end for my nursing career – aandnd mmyy aabilities.”bilities.” a job I loved and still miss. “The longer I was off sick, the more I started to lose confidence in myself and my abilities.” I was devastated and fought to available – not necessarily of the representative, with my Union Rep come back to work. My employer same level of responsibility or present. It quickly transpired that did make the temporary wage, only what is available and my options were to drop 2 to 3 “reasonable adjustments” as suits the employee’s skills. Naturally pay and responsibility grades. required under the Disability I applied for other jobs while I was Despite the wage decrease, I Discrimination Act, to allow me to off sick as there was a very real decided that “a job” was infi nitely work in clinics where I would not possibility that there wouldn’t be better than “no job”, and that be alone. However, at another tilt a suitable role with my current returning to work, at whatever test in October ‘07, I was given a employer. I got good feedback level, would help me re-build diagnosis of postural tachycardia from an interview I had with a my confi dence and increase my syndrome (POTS). I can remember private fi rm, although I didn’t get offi ce-based skills. So I applied driving home later, knowing it was the job. However, there were many for one of these roles and had probably the last time I might be other roles for which I was very well an informal interview. The lovely allowed to drive, and aware that qualifi ed but was not invited for manager felt that there must

01789 450564 www.stars.org.uk [email protected]

6 be a role more suited to my Access to Work, which is affi liated this particular journey to start a qualifi cations and experience – to Job Centre Plus, to help people family, but I am so much more so she looked at the vacancy list, with disabilities get back to work. confi dent about dealing with it all found an offi ce job at my previous than a year ago. level and arranged an interview. I believe I was helped by the fact that I was prepared to consider I have been truly fortunate that Despite suffering pre-syncope what I can do, rather than what I I have such an understanding spells during the interview, I was can’t, even when that meant giving manager and a supportive employer offered the post subject to a short up my nursing career and some of - I know everyone is not so lucky. probation period. I was so nervous my independence via the driving I am also aware that many when I started work again, partly as licence. The happy news is that a people with NCS, POTS and other working in an offi ce job was new to year after I fi rst went off sick I am now conditions collapse more frequently me, and partly because I couldn’t very settled in my job and my health than I do and are more incapacitated expect my new colleagues to help has improved somewhat. I still can’t afterwards, which may make and support me as my friends do all the things I used to do, but I working much more diffi cult and a always did. It’s not easy trying am out of the worst phase (for now - I potential risk for an employer. So I just want to wish lots of luck to ““II wwasas ppreparedrepared ttoo cconsideronsider whatwhat I ccanan ddo,o, anyone else going through a rratherather tthanhan wwhathat I can’t...”can’t...” similar situation. Keep positive, fi nd out your rights, be prepared to to make a name for yourself in a know it often goes in peaks and adapt and change, and keep new career when you collapse or troughs). I recently saw an eminent believing in yourself. You have sway “drunkenly” on the way out of professor in London who plans to skills and experience which will be meetings! However, my colleagues carry out more investigations in valuable to an employer in some have been extremely supportive order to nail the diagnosis and look capacity – and you may even be and so has my manager: he at potential treatments again... able to work from home or start changed the fi ling cabinets so I but I’ll have to wait a year or so your own business, or work could avoid bending and crouching, as I found out recently that I am freelance if that suits you better. ordered a fan to cool my side of the expecting a baby! I know I will have Don’t give up hope! offi ce and is supportive of time off many more ups and downs and will for medical appointments. I also need plenty of support and advice Anita Kiernan received invaluable support from from STARS and its members on Manchester

THE FAINTING PHENOMENON By Blair P. Grubb MD

Many of you are familiar with the writings of Blair P. Grubb, the world’s leading authority on POTS and fainting generally.

STARS is able to offer this book to the fi rst 20 members to send in an A4 stamped addressed envelope (must have the correct postage of £1.08). This is a one-off opportunity to have this brilliant book at home for your own reference and it is FREE!!!

S.A.E. to Jenni Cozon, STARS, PO Box 175, Stratford upon Avon, Warwickshire. CV37 8YD

01789 450564 www.stars.org.uk [email protected]

7 Another Diagnosis for Dr. Google!

The doors closed at the next She also referred me to a station and I was imprisoned on cardiologist, this frightened me the train for half an hour terrifi ed somewhat as I was now convinced out of my wits. I thought I was I had had a heart attack at least having a heart attack and I was 3 times and she looked happy going to die, yet I felt such an idiot, about it. and so nauseous I convinced myself that this was way too So what does one do under these embarrassing. I wasn’t going to die circumstances? Resort to Google. until I got off the train in London The fi rst word I came across was where I had this vision of me suppose when writing things syncope, I looked this up and saw stumbling off the train and like this you have to tell a reference to Epilepsy, shock i collapsing like a dying swan on the people some basic facts horror, I would rather have a heart platform. But I didn’t, and I tried otherwise, as the story rambles attack because they can fi x them to shrug what had happened off. on, they imagine a picture of the can’t they? writer which is totally alien to what they are. ““II ddon’ton’t hhideide bbehindehind tthehe ddisabilityisability llabelabel bbutut I ddon’ton’t wwantant ttoo bbee bbeateneaten uupp jjustust So in the way I used to write an essay at school, my name is Ron, bbecauseecause I hhaveave oone.”ne.” I am 55 and a half and until I fell foul of VVS nothing fazed me. I was After Christmas I was in the theatre Eventually I found VVS and when as they say bullet proof, or so and just after the lights went down I told the cardiologist, he then let I thought. I had another attack, and shortly fl y about all his years of training after that in a cinema, but I wasn’t and heart ache and personal prompted to see anybody about sacrifi ce and here yet another I was on a train to London early it until it started to happen in a one morning in November, it had patient had diagnosed himself restaurant and then only because with Dr. Google. I was put on been raining and as I sat into my I had to get out of the place before Propananol which on one hand seat the warmth of the carriage I paid the bill which annoyed my improved me a bit yet I was and its many occupants was only wife intensely. equal to its humidity. I got out my lethal behind the wheel of a paper and within 5 minutes I had My GP suggested I might have car. My wife didn’t like them my fi rst Vasovagal pre-syncope Vertigo and referred me to the ENT either as I now wasn’t attack, although I didn’t know what department of my local hospital. frightened of her as my fl ight it was at that moment. or fi ght mechanism was disabled. Well, after a student doctor managed to drop me off the ENT ““II wwasas rreadyeady ttoo ddoo battlebattle Discharged to my GP he took me torture table because I am a heavy off these and decided a course of wwithith ddoctordom,octordom, ooncence 6 ft 3 tall and he was a slight 5 ft mind bending anti-depressants. 6, the accompanying consultant aandnd fforor aall”ll” asked some questions and looking “This may take up to 10 years really pleased with herself said to produce results.” At this point “I know what’s wrong with you, I decided that I would never Intense dizziness and nausea, it’s not an ENT thing but we will make a hardened drug addict as I couldn’t see, there was a buzzing send you for an MRI which will be I didn’t like the side effects and in my head and I was sweating negative just to prove I am right.” stopped them, as I was sure I heavily. Well it made sense at the time. could conquer this on my own.

01789 450564 www.stars.org.uk [email protected]

8 But I couldn’t, and I went back to my next lifetime fi nding you something as I couldn’t do my job as before. GP’s surgery but fate played its that works.” But since then I have started my hand and I was destined to see own business which keeps me another GP who would change Immediately the beta-blockers away from my triggers and I am my life. worked as long as I did some happierthan I have been for a exercises occasionally and upped long time, but let me say this one I couldn’t sit in the waiting room as my salt and liquid intake. thing about me as a message it triggered an attack and instead I still can’t get into a train or a to unsympathetic employers of of shouting out the window when it stuffy location without the terrors those who become disabled. was my turn I was left in the rain but I understand this will be stomping up and down way past my I don’t hide behind the disability something of a work in progress appointment, so when I got in I was label but I don’t want to be until my mind forgets what VVS ready to do battle with doctordom, beaten up just because I have feels like. once and for all. The doc rocked one. I didn’t choose it; it came back in his chair, put his hands My employer on the other hand has and stuck itself on me. behind his head and said “Lets go been despicable in his attempts to the expensive end of the market, to get rid of me, which is leading and get a state of the art beta- to an appearance at an Industrial Ron McAlpine blocker. If not we will spend the Tribunal after they fi nally sacked me Surrey

Flying with RAS aking the decision to go on holiday was not too m diffi cult considering that our daughter Shelby suffers with RAS. Shelby was fi rst diagnosed at the age of nine months with this condition. It is a very frightening experience when your own child loses consciousness in your arms and you are powerless to do anything about it. However, after quite a few months we had a better understanding of what triggered our daughter’s attacks, which mainly occur in the evening when tired or if you touch any part of her head including taking clothes on and off. I picked her up and put her into the recovery position. It was a full blown one and she took a few moments One of our main concerns about the holiday was the to come round. As I looked up, the whole plane was travelling and the early morning start. As parents we looking at me as if I had just shot her!!!!! Their faces had discussed the best way to deal with it and decided were fi lled with fear and the stewardess just stood that we would put her to bed as normal, and when there speechless until I could explain her condition. we needed to leave for the airport, just transfer her to the buggy where she could continue to sleep until we Once she had come around, she fell asleep in the sky arrived at the airport. This proved to be a good cot till we were about to land, which was approximately decision as she continued to sleep and when we one hour later. When we landed she was very clingy arrived at the airport at 7am she was as good as gold! to me as I had dealt with her attack, but I am always happy to have extra cuddles, as she is a ‘Daddy’s Girl’! Shelby is not a shy little girl and lapped up all the attention she received, but we soon realised this The rest of the holiday was perfect and Shelby had started to affect her behaviour as she became hungry a wonderful time. Looking back I still think we would and tired. We gave her a snack and walked up and have gone, even knowing about Shelby’s attack, as down the place but what was required was a sleep you cannot live life around RAS. The only change we (fatigue being one of her triggers). As we also have might contemplate is not to have such an early fl ight as a fi ve month old son, Levi, we had a sky cot and Shelby was far better on the return fl ight in the tried unsuccessfully to put her to sleep - she was afternoon/evening. However, it was a well worth while more interested in what was happening on the plane! trip and we have many happy memories and pictures to look back on. Our worst nightmare happened!!! We were about to go for a walk down the plane, I turned round and Shelby Daniel and Lauren Matlock had an attack and fell over. Without a second thought Hertfordshire

01789 450564 www.stars.org.uk [email protected]

9 SUBSCRIPTIONS OORDERRDER YOURYOUR WERE DUE ON PPACKACK NOW!NOW! 1 JANUARY 09 STARS Syncope and RAS Alert Cards are now available in Only £15 / $25 / €25 packs of twenty, at the low price of just £1.00 If your subscription is overdue, They are popular with all ages please remember that we rely on donations and subscriptions Seizures because of the simple manner anoxic And Refl ex Syncope Trust ndividuals, families and medical gether with i formation on to maintain the level of care “working to ffer support and in in which they inform and protect. professionals to o ex anoxic seizures” syncope and refl and support that STARS Admin: +44 (0)1789 450564 0800 028 6362 Just the size of a credit card, Freephone: currently provides. Email: [email protected] the STARS Alert Cards provide Web: www.stars.org.uk key information for new carers, A STARS subscriber receives a

s work colleagues, family friends, password that gives access to the NAME: Anoxic Seizure ex life threatening) I suffer with Reflepilepsy and is NOT Syncope message board and is (this is not connected to schools and the general public Please make sure I am safe ry position ease put me in the recove able to download all our leafl ets Pl ly to me and wait for me mins) and so help YOU! Please talk quiet to regain consciousness (normally only 1 or 2 whenever required. CALL IMMEDIATELY: - 999 RGENCY SERVICES To order, contact either ned also call for EME If injured or concer [email protected] or [email protected] You can fi nd the Subscription Form on the back page. STARS Syncope Message Board http://health.groups.yahoo.com/group/syncope/ For those of you who have not joined the Board there is support, information, help, not to mention fun and friends to be made, when you decide to take part. It is always buzzing and your fi rst posting will be answered with a stampede of ‘welcomes’. For some of our members it is a lifeline at times, for others it is where they can share the excitement of a wobble-free day! We look forward to welcoming you!

REFLEX ANOXIC SEIZURES is a If you would like a copy of type of arrhythmia (heart rhythm disorder) occurring mainly in young children but the STARS US newsletter, can occur at any age. The sudden shock of pain, however slight, or indeed any please contact Rebecca at un-expected stimuli, causes the heart and breathing to stop, the eyes to roll up into the head, the complexion to become [email protected] 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 PIPPA (Left) - I have been with STARS since the breathing restart. The sufferer may remain end of June after graduating in History from unconscious for one or two minutes or the University of Birmingham. I have been for well over an hour. RAS is often involved in the research and development of misdiagnosed as breath-holding or, more the new SaFE project for STARS. You can seriously, as epilepsy. contact me at [email protected] SYNCOPE (pron: sin-co-pee), is a result of the temporary cutting off of the supply of oxygenated blood to the brain. The HEATHER (Right) - I joined the charity in mechanism of the syncope in susceptible October having graduated from Birmingham individuals includes refl ex cardiac stand still City University with a degree in Media (always reversible) commonly following a Photography and Journalism. I help Jenni on surprising bump to the head or elsewhere. Recurrent syncope is perhaps one of the STARS helpline and have responsibility for themost challenging and, at the same fundraising and the newsletter. You can contact time, most frustrating problems that is me at [email protected] encountered in clinical practice.

01789 450564 www.stars.org.uk [email protected]

10 FUNDRAISING STARS TThankhank YYou!ou!

Special thank you to all our STARS who have helped us by fundraising or running around the country as one of our volunteers! We cannot thank everyone individually but special mention to:

Alexandra Whitman for all the miles she has travelled for STARS this year! Stanton Drew Primary School who raised nearly £150 through their Harvest celebrations. The Glorious Fourth! The pupils and staff at The King’s School Being a sporty and competitive type of guy, I thought Gloucester who made a wonderful surprise it would be fun to run a sweepstake at work for our donation of £206.83 baby’s birth weight. This idea quickly escalated into three such competitions – one for the weight, one for Stephi Wallace who volunteered to collect the date and one for the time of day. All we knew was a cheque from George Stephenson High that the due date was 12 August. School, Killingworth, North Tyneside for the magnifi cent sum of over £1500. Thank you!! I decided to use it as an opportunity to raise awareness for STARS as I tend to fi nd that the average person has never heard of RAS or Syncope. I am forever grateful that my own condition (Syncope) was diagnosed correctly and not simply presumed to be epilepsy. The competition created great excitement at work and everyone had their own theory on what weight the baby would be and at what time of day he/she would arrive. According to one of my work colleagues, babies are statistically more likely to arrive between 4am and 5am than at any other time of day….! I think just about everyone at work took part and some even had more than one guess. Our beautiful Hello, I am an authentic son, Daniel, was born on 4 August at 8.08am STARS bear. To purchase weighing in at 6 pounds 14.5 ounces. Half of the my friends, who are just as money was to go to STARS and in the end all of adorable as me, contact the winners very kindly donated their winnings [email protected] as well.

I have been meaning to do some fundraising for STARS for the last couple of years since I was diagnosed with Syncope and had my pacemaker implanted. It is such a great charity and the team does tremendous work.

I am really pleased to have used the birth of my son as a way of supporting STARS and raising awareness at the same time. Charles Vickery Worcestershire

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11 Big Sur Marathon ‘m a 34 year old Territory Manager for a medical Where I live is fl at, like i company and I like to try and set myself a challenge Holland, it’s very fl at. each year. This year I decided to run for STARS Where I am running as my sister in law, Anita, has POTS and has lived with is hilly, very hilly. I’ve the condition for the many years IA have POTS known her. AsMarathon since learnt that there a charity you were a great source of support for her is over 1000ft in when the condition meant that she had to give up elevation and 16 hills, Nursing and her driving licence in a short space of one of which lasts time. So as a consequence I wanted to try and do over a mile on the something that would allow you guys to continue to incline and climbs for support others who need your help. over 600ft. Oh, and its right in the middle of the race. The Big Sur Marathon on April 26th is my chosen So I have a healthy level of fear for the task ahead. challenge, as I write this it’s December 2008 and that Between now and then I will have run over 650 date seems a long way away. On January the 4th I miles, worn down 2 pairs of trainers, ran many will have started a 16 week programme that if all goes times with a hangover, been chased by a dog (at to plan will get me round on the day. I wanted to do least once) and fi ve times a week donned a very something a bit different and read in a running fetching pair of Lycra leggings. Most importantly magazine that the Big Sur Marathon is listed as one of I hope to have raised some money for STARS.

““II rreallyeally aadmiredmire people,people, likelike Anita,Anita, whowho ffaceace tthehe cchallengeshallenges The thing with this sort of physical challenge is that I get to choose to do tthathat ttheirheir cconditionondition ppresentsresents eeveryvery dday…ay… nnowow tthathat ttakesakes it. And if I can raise some money at ddeterminationetermination aandnd tthathat wwillill bbee aallll tthehe iinspirationnspiration I nneed…”eed…” the same time, excellent. The people I really admire are the people, like “I reall admireAnita, people, who like face Anita, the challenges who face the that challenges that the races you should really run as it takes part on a theirtheir condition condition presents presents everyevery day…nowday and overcomethat takes determination beautiful location on the Californian Pacifi c coast in them each andand thatevery will time.be all the Now inspiration that takes I need…” Monterey. Well that was enough for me, I signed up, determination and that will be all the inspiration booked fl ights, looked at car hire, and made a list of I need when running up those hills. whom my wife, Cathy and I could visit whilst over there. Glen Kiernan I was as excited as a small child at a wedding do with Lytham St. Annes a dance fl oor and a new pair of trouser knees to ruin. Then I started reading a bit more about it and began Full details on how to sponsor Glen can be found on to wonder if I had bitten off more than I could chew. www.justgiving.com/glenkiernan

g QT Syndrome Lon The latest patient information On the STARS website leafl et available for our there is an inspiring

m Charity The Heart Rhyth members is Long QT story by Marian rstanding, diagnosis, ter unde ls Promoting bet ife for individua nd quality of l treatment a thmias with cardiac arrhy Syndrome. Written and Damgrave. approved by our panel of International medical Marian is from the experts, this booklet is Netherlands but for anyone who may be has also provided a affected by this relatively translation for our Dutch members. rare condition. Long QT Syndrome – nformation Leaflet The article can be located in the Patient I ythmcharity.org.uk 496 ©2008 www.heartrh ity No. 1107 Registered Char If you would like a copy Case Study section contact either http://www.stars.org.uk/html/case_studies.html [email protected] or [email protected]

01789 450564 www.stars.org.uk [email protected]

12 Maddy Making Music for STARS I am Maddy Guthrie, 17 years of age, from Inverurie in Aberdeenshire. Since I was about two I was diagnosed with having RAS. I know there are people who have it much worse than me so I decided to use my love of music to help. I have been playing the oboe for about six years and I thought a practice-a-thon would be a great way to do something for STARS and help other sufferers like me. I really enjoyed playing the oboe whilst being able to raise money and it was also really good for me to get into the routine of practicing! I started by getting people to sponsor me to do 40 minutes of practice every day for two weeks in December. I played in the practice rooms at school in my free periods and also at home. I have enjoyed the whole experience and have raised nearly £60 for STARS. Maddy Guthrie Inverurie Christopher Shepheard-Walwyn

Many of you will have read in the last newsletter Christopher’s personal account of his brave attempt to cross the English Channel last June in a one man rowing boat. He became the youngest solo rower to achieve this and the enormous respect he earned has been refl ected by the support of his school, Canford School, Dorset, and the generosity of the pupils and parents. He has raised nearly £10,000 for STARS. This is an incredible amount and surpassed everyone’s expectations. Christopher undertook this feat to show his gratitude to STARS for the help and support we have given to his girlfriend Kellie, who suffers with POTS. We say thank YOU, Christopher and during next year we hope to show you and Kellie how this amazing amount is being used to help those who are affected by this debilitating condition.

No Christmas Cards for STARS!

It has become a tradition for Support Staff at The Abbey School, Reading to write one Christmas card for colleagues and then donate the money they would have spent on Christmas cards to a charity of their choice. Ruth Adby (Back Row Far Right) has headed the campaign over the past few years. This year, because STARS member Margaret Moffat is also a member of staff, STARS was the chosen charity and we received a cheque for £120. Thank you Abbey School! WWhathat a ggreatreat wwayay ttoo ffundraise!undraise!

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13 FACE TO FACE WITH TRUDIE LOBBAN Chief Executive of STARS guidelines to establish a STARS support group in every country, but Pippa Mawle and Heather we must never lose sight of the fact Peebles, two of our young that there is still more work and graduate recruits, were improvement to be made in the fortunate enough to catch support, information and advice we up with Trudie between her provide for our members in the UK. travels to ask her about 2008 and her hopes for 2009. Our Information and Helpline in the UK receives over 125 new enquiries every month. If you Pippa: You have been multiply that by twelve, STARS travelling and lecturing all over has over 1500 new members the world. Where has STARS each year. But remember, not taken you over the last year? only do we support these new members but we also continue Trudie with Sir Roger Moore KBE Trudie: During 2008 I travelled to provide advice, comfort and to fi ve continents. The New Year reassurance for our existing oversized suitcases full to the began in Australia, then onto members. We are on call 24/7! brim with STARS literature. There Sweden, Paris, Japan, San was a stampede to the STARS Francisco, South Carolina, Italy, Pippa: Which celebrities information desks at the Germany, South Africa, Belgium, have STARS been linked to in conference and we left with only and Rome and I ended the year 2008? two business cards. The demand in Barcelona. I was presenting to for STARS support groups in San patients and carers as well as Trudie: Sir Elton John joined Francisco, California and Texas is industry and medical professionals, Sir Roger Moore as a patron of huge. It highlighted to me what but at all times I was able to STARS. Some of our members a long way we have come since spread the news of STARS, the may have spotted a mention the launch of STARS in 1993. work we do and the services we of STARS in Sir Roger‘s provide. South Africa was really autobiography, ‘My Word is My Pippa: What do you interested to learn about our Bond!’ I was lucky enough to be consider to be STARS’ greatest Rapid Access Transient Loss of invited along to meet him when achievement or development? Consciousness Clinics (RAT- he was in Cheltenham for a LOC) and Japan is asking for our book-signing. I took Rebecca Trudie: One of the great success medical literature to be translat- Smith, our Executive Director of stories for the charity was the ed – a compliment to us all and a STARS in the US with me. He launch of the ‘Blackouts Checklist’ refl ection of the results we are was absolutely charming and is which is designed to help patients achieving! so supportive of STARS. and medical professionals work together to reach a correct Heather: How has STARS Heather: When looking diagnosis in the event of loss grown over the last year? back over the year, was there a of consciousness. It was prepared memorable occasion during with the guidance of STARS Trudie: STARS grew rapidly during your travels that sticks in your Medical Advisory Committee. The 2008. Due to constant demand mind? checklist has proved the most for advice and guidance from sought after material that we offer, sufferers of syncope throughout Trudie: A very special moment for providing information that is the USA, we launched STARS me was the magnitude of interest needed by both medical US in October 2007. They that STARS received at the annual professionals and patients alike. are now organising ‘Syncope Heart Rhythm Society meeting in It has been translated into seven Awareness’ days to be held all San Francisco, the largest heart different languages and consultants over America during 2009. rhythm conference in the world are even asking GPs to complete for allied professionals. I struggled the checklists prior to referral! For the future we hope to write across the Atlantic with two

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14 Hot on the heels of this triumph Pippa: Everyone expects be of benefi t to all our members has been the education project, STARS to have a new initiative seeking a diagnosis in the future. ‘Shine a Light on Education’. This in the pipeline, so what new As I alluded to earlier, we are provides information and advice for projects can we expect to see working on a POTS website parents, teachers and sufferers on from STARS during this year? to support the ever growing how best to manage syncope in a number of sufferers, as well as learning environment. The success Trudie: We will not disappoint! provide information for medical of the ‘Shine a Light’ project can 2009 will see the exciting launch professionals, many of whom be seen by the fact that across the of the campaign ‘Syncope and know relatively little about UK educational establishments, Falls in the Elderly’ (SaFE). Over the condition. carers and pupils diagnosed the last few months STARS has with syncope continue to contact been researching the link between Pippa: We all know you STARS for information and syncope and falls in older people. are looking for ways to improve guidance. Syncopal events and falls in older the support we can give our adults are a major cost burden for members. What are your hopes Since this initiative was launched, the NHS. Syncope is estimated for this year? we have organised STARS to have a prevalence of between Information Representatives (SIRS) 10/20% in A&E attendees who Trudie: I would like to improve to provide support for this have had injurious falls. The most the funding for STARS to update campaign. To date 1000 information common age group for blackouts to literature for patients and booklets have been sent out occur is in the over 70 year olds. healthcare professionals and to following requests, and 15 SIR However, despite this high number support the manning of the presentations have been made to of occurrences, syncope poses a information helpline. nurseries, schools and colleges, major challenge to investigation, with ten more pending and requests diagnosis and management in A further area for improvement coming in weekly. older people. The STARS SaFE would be to encourage more project aims to promote accurate volunteers to assist with the ‘Shine Finally, over the last few months diagnosis treatment and better a Light on Education’ project. We our average staff age has dropped quality of life for older adults receive enquiries weekly from by twenty years!! We have experiencing unexplained loss of schools asking for information recruited new university graduates consciousness. We intend drafting and advice on managing Refl ex to develop projects at STARS. educational literature to raise Anoxic Seizures. We need support Their contribution has been of a awareness of the link between from more STARS Information high standard and we, as a charity, syncope and falls for the elderly, Representatives (SIRS) to go into value their research and ability to their carers and medical schools to explain how to support learn and bring forth new ideas. professionals in the near future. our young sufferers during the school day. If there is any Heather: Because I help Heather: What other volunteer who would like to Jenni with the helpline, I am developments will there be on be trained in this area, please always taking calls from the STARS website? email [email protected]. We need sufferers of POTS. Will we volunteers from all over the be doing anything in the Trudie: STARS’ support and country! future to help sufferers of encouragement for Rapid Access this debilitating condition? Transient Loss of Consciousness Trudie: Now on a personal note, Clinics will be strong during 2009, 2008 was a devastating year Trudie: Demand is ever and will be highlighted by the for me and my daughters, increasing for information, launch of the Rapid Access T-LOC Charlotte and Francesca (both support and advice for Postural website by the end of February. The of whom work voluntarily for Orthostatic Tachycardia Syndrome website, to be hosted by STARS, STARS), but the support and (POTS). STARS will be has been designed for medical kindness shown by patients developing a section on its website professionals to support them and medical professionals has for this unrecognised and unfamiliar in the setup and management only reinforced my passion for condition. Dr Blair Grubb, the of clinics which will assist the STARS. This charity needs to world’s leading authority on POTS rapid and accurate diagnosis of be bigger and stronger for the has contributed a number of articles patients suffering from unexplained work to continue for many years for this section. loss of consciousness. This will to come.

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15 POTS, PREGNANCY AND BABY three months to be weaned off fact, I stopped doing anything that all the medication for my various required any more effort than sitting health problems. Coming off the still. If I had been able to do more beta-blocker I took for my POTS before I got pregnant, I would have meant that I went back to feeling found pregnancy very boring and lightheaded every time I stood up, lonely by comparison but I was and fainting even more frequently already used to solitary daytimes than usual. It took some time and actually quite enjoyed before I got pregnant, so for a while spending time just talking to my it seemed like I was putting up with ‘bump’. ““HowHow oonn eeartharth wwouldould I bbee aableble ttoo ccopeope wwithith llookingooking aafterfter a bbabyaby wwhenhen I ccanan oonlynly MAKING THAT DECISION jjustust llookook aafterfter mmyself”yself” When you suffer from POTS or any other fainting disorder, the decision to try for a baby is not the extra symptoms for nothing My inactivity paid off because, straightforward. I faint at least a but eventually, with the aid of the although I still had tachycardia few times a week, I am too ill to fertility drug Clomid, I got pregnant. and my blood pressure was low work, I had to give up my driving throughout pregnancy, I fainted far licence because of my fainting, less frequently than I normally do. and I use a wheelchair outside the COPING STRATEGIES Of course, if Simon and I decide home because I can only walk a Because I tend to faint with little or to have another baby, pregnancy few yards. My husband, Simon, no warning the most diffi cult and, will be more risky because, with a and I had a lot of questions and indeed, expensive thing about toddler to look after, I won’t be able worries about how on earth I would pregnancy was trying to minimise to spend my time sitting around be able to cope with looking after the number of times I fainted to doing nothing. However, we’ll cross a baby, when I can only just look reduce the risk of injuring my baby. that bridge when we come to it. after myself. We waited a few years Stairs are one of my worst triggers, in the hope that my health would even though I crawl rather than The other diffi cult thing about improve but it didn’t. Eventually, I walk up them. Before I got pregnant pregnancy was coping with other became so depressed at the we had part of our garage converted people’s attitudes to me becoming prospect of a life without children into a downstairs toilet and shower a mother. A lot of people said things that Simon and I decided to start room so that throughout pregnancy like; “You can’t look after a baby. trying anyway. I could come downstairs in the What will happen to it when you faint?” Even worse was the attitude ““TheThe ootherther ddifficultifficult tthinghing aaboutbout ppregnancyregnancy of Social Services who thought that my fainting would pose such wwasas ccopingoping wwithith ootherther ppeople’seople’s aattitudesttitudes a danger to my baby that they ttoo mmee bbecomingecoming a mmother.”other.” threatened to put her on the ‘at risk’ register unless I agreed to make sure that I had someone else morning and not go back upstairs with me 24 hours a day once she The fi rst challenge was to come off again until I went to bed at night. I was born. Having people question medication that might be harmful also had to stop doing housework my ability to care for my baby to an unborn child. It took me and start paying a cleaner. In reinforced my own fears about how

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16 I would cope. However, before I I’m standing has been easier said she was in a lot of pain due to even got pregnant, I had thought a than done. Careful choices of baby severe gastro-esophageal refl ux lot about what I could do to keep equipment have helped. For exam- and I felt powerless to help her our baby safe and I knew really ple, we chose a cot with a side that because I couldn’t walk her up that she should be pretty safe as can be dropped right down and un- and down or take her for a drive long as I did everything with her at fl oor level and had someone ““IfIf I hhadad ttoo rrecommendecommend oonene tthinghing fforor pparentsarents else do the things that I couldn’t wwhoho hhaveave ttoo ddoo eeverythingverything oonn tthehe ffloorloor bbecauseecause ooff safely do for her. Simon and I had to budget for me to have some help ffainting;ainting; itit wwouldould bbee DDIY-typeIY-type kkneenee ppads!”ads!” for a few hours a day and, since Social Services weren’t prepared derneath, so that I can sit or kneel to soothe her. I can’t take Bridget to contribute towards that, they had on the fl oor to lift Bridget into and out for walks in her pushchair and to accept that for most of the day out of it. Instead of a standard high we are rather isolated because I would look after our baby alone. chair, we bought one that can be we can’t get to baby and toddler used as a ‘low chair’ so that I can groups. Instead, Bridget goes to put Bridget into it without standing, nursery once a week to enable THE BIRTH and then sit or kneel on the fl oor to her to interact with other children. Bridget was born by caesarean feed her. Once she reached three on 19 July 2006, weighing 5lb months Bridget was old enough for However, there are a lot of things 8oz. Whilst having POTS doesn’t me to start using a buggy to move that I can do for Bridget. Because necessarily mean that a caesarean her around downstairs but, until that I can’t work, she has my undivided is needed, I faint so easily that it point, I had to walk on my knees. I attention all day. I was able to seemed unlikely that I would be still spend a lot of my time on my breastfeed her until she was 13 able to give birth without fainting knees when I’m with Bridget to months old, which seemed to have at every push. As it turned out, minimise the chances of my fainting the added benefi t of limiting the Bridget was breech so that made and falling on her, so much so that severity of my POTS symptoms the decision to go for a caesarean if I had to recommend one thing for throughout that period. Although even easier. Apart from being parents who have to do everything I can’t risk using the cooker, I use admitted to hospital the evening on the fl oor because of fainting; the microwave to provide Bridget before the delivery so that I it would be DIY-type knee pads! with healthy home-cooked meals. could have a couple of bags of I play with her, read and sing to intravenous saline overnight to It has been harder to deal with the her and even take her to a parent prevent my blood pressure emotional side of being a parent and baby swimming class, albeit dropping with the spinal with POTS. Parenthood for me is with paid help to get there and to anaesthesia, I didn’t need any very much a compromise between dress her afterwards. Although I other special precautions for a what I would like to be able to do am disabled, I am still Bridget’s caesarean delivery and recovered and what I actually can do. There primary caregiver. I look after her quickly. are some things that I simply can’t on my own for 10 hours a day. I do for Bridget that healthy parents entertain, educate and comfort take for granted and it has been her and, although chasing after a BEING A MUM very hard to come to terms with toddler all day doesn’t help my Parenting with POTS has raised that. Whilst I can help with bathing POTS symptoms one bit, being quite a few practical issues, some Bridget, I can never risk bathing Bridget’s mum brings me so much of which Simon and I had been her alone, nor can I carry her joy every day that it is defi nitely able to plan for before Bridget was upstairs, which means that she well worth it. born and others we have to resolve has a much later bedtime routine as we go along. Doing every- than other children because we Clare Martin thing with Bridget at fl oor-level and have to wait for Simon to get home Buckinghamshire avoiding ever carrying her while from work. When Bridget was tiny,

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17 ENJOY EACH DAY! y daughter Amy, who is m now 13 years old, started to ““…take…take heartheart thatthat childrenchildren areare soso rresilientesilient have blackouts when she aandnd aacceptingccepting andand enjoyenjoy eeachach dayday aass wewe kknownow was eight and half years old and was only last year diagnosed with nnotot wwhathat ttomorrowomorrow bbrings.”rings.” neurocardiogenic syncope. She has never had more than four booked. The scan revealed a the sixth tumour operation, Amy seizures a year but they were very tumour under the front of Amy’s went into hospital to have her frightening episodes. brain which was attached to pacemaker fi tted and is now doing the brain lining and the carotoid very well. artery. Extensive worldwide research by her team of doctors We are immensely grateful that found there was no recorded she was given a pacemaker as medical documentation of the many of the medical procedures same existing condition, so Amy have brought on syncopal became the fi rst person to suffer episodes. It has been a very a tumour of this kind. black year for Amy but she is coping remarkably well and has We were still trying to come such a lovely, gentle accepting to grips with her diagnosis of nature. Amy has to live with both neurocardiogenic syncope and the tumour and syncope until such the fact that the doctors had times that the medical profession recommended a pacemaker to develop advanced methods of help this. In June 2008 Amy tumour removal. had the fi rst of six operations to Last year she had a tilt table test try to get rid of the tumour. At fi rst To all out there who are at the Children’s Starship hospital the surgeon was going to do a experiencing bad times with here in Auckland, New Zealand. Craniotomy to access the tumour their precious ones, take heart When she blacked out on the table but consulted an Ear Nose and that children are so resilient and they discovered her heart stopped. Throat surgeon who said he accepting and enjoy each day This year, during routine tests could access the tumour going up as we know not what tomorrow which included a refl ex test, it was through the nose. We weren’t to brings. discovered that her refl exes were know that it would take this many more than they should be and operations to get the tumour to a Lee Fitzsimmons so an MRI scan of her head was manageable size and, just before New Zealand

“Trudie” where are you?

A few months ago we were very honoured to receive a visit from Ryoji Noritake of The Health Policy Institute of Japan. Trudie was introduced to Ryoji during her speaking tour of Japan and whilst he was in Switzerland he decided to pop over to see for himself the STARS offi ce and how we accomplish all that we do with such a small team of staff! He then admitted that his Institute had been so impressed with the STARS success story that he had been charged with the task of fi nding ‘a Trudie’!!!

Trudie with Ryoji Noritake and Pippa Mawle

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18 STARS Youth Newsletter TTWINKLERS!WINKLERS! A Twinklers Topical Teddy Bear Colouring

Helpful fundraising tips!

Choccy Challenge

Pic ‘n Mix Quiz !

Cheesy Scones

INSIDE Recipe

Jokes

www.education.stars.org.uk

19 Choccy Challenge 2. Place • Decide where you want to 1. Do these wear a cross? hold your event and make 2. Sudden explosion! sure the venue provides 3. Such a noisy critter. everything you need. 4. None of your riff-raff living here! • Have a contingency plan in 5. Smelling so sweet? case it rains on the day of an 6. Linked to cricket, perhaps? outside event 7. Will these make number one? • Ensure the venue has 8. ‘To infi nity and beyond’, a suffi cient insurance to cover universe away! your event. 9. My mum’s local! 10. An Eastern treat 3. Money 11. Voodoo! • It is a good idea to consider 12. Birthday parties galore! 13. Too late for little ones! how much your event will cost 14. Feline equipment! and how much your event is 15. Noughts and Crosses, almost. likely to raise. 16. A* students 4. Helpers 17. Always on the fence, can never decide! • Gather a team of willing Help 18. So fi ddly to fasten. helpers – allow for last 19. A toothless drink? minute changes. STARS and 20.. Royal herb? • Be sure of everybody’s Answers on page 23 particular skills – and use them! have FUN! • Draw up an agreed plan of who is doing what. Could you make a difference and Helpful • Give a copy of the plan to all help fundraise for STARS? The the helpers. success of STARS Education Fundraising • Ensure that everyone knows project has lead to increasing what to do and feels happy requests for an informative, and confi dent about it - supportive DVD. In 2009, STARS Tips people are more willing to would like to raise funds to make help if they are happy. this possible… could you help? 1. Timing • When all jobs have been allocated, make sure that Below are some tips for Fund- Thinking ahead is key to the whole team knows all raising Frolics! However, if you success. Once you have decided of the dates and timings - are like me and would welcome your event, start planning, communication is essential. a little help, why not try out the giving yourself plenty of time. • For fundraising in schools, ‘Choccy Challenge’. Suitable To be successful and minimise for all the family, enjoy a mind have a meeting with the stress, the important factors puzzling challenge and raise Head Teacher or form tutor to cover are: funds for STARS! There’s even a to ensure you have their full ‘Pick & Mix’ sweetie teaser for • Permission from relevant support - you may even get the younger readers on page 23. authorities their help. Raise £10.00 for STARS, and in • Publicity return you will receive a • Hall bookings cuddly STARS teddy bear! Perhaps use it as a prize! • Getting sponsorship

www.education.stars.org.uk

20 Updates and Letters! Too often accessing education can be a challenge for many students who have been diagnosed with syncope. In the last Youth Newsletter, Sophie told us of her struggle to maintain attendance at college. Thankfully, Sophie benefi tted from the help of family and CBT – Cognitive Behaviour Therapy. Now, with a bright smile, Sophie has written to STARS to let us know how she is progressing.

Hi Everyone Things are still going well, and I am now waiting for an interview for NVQ Level 3 ‘Health and Social Care’. I can’t wait, I have fi nished a project on dementia, just need to put the pages together and hand it in then my assessor will ask her colleague to contact me to fi x a date You1 ST to start Level 3! I was even in the local newspaper recently - STARS UK I got an award for my NVQ Level 2 (in Social Care) and I was presented with the Manager’s award for being ‘’A confi dent, caring member PO Box 175 of the care staff!’’ How great is that? I was the only one who got the Manager’s Award Stratford upon Avon amongst all of the staff at the home, including managers, activities lady, senior carers, other assistants, domestic and kitchen staff. At last Warwickshire I feel so good, I was so happy when they read my name out. I was given a big bunch of CV37 8YD fl owers, chocolates and a voucher Things do get better!

SSTARSTARS mmembersembers hhaveave aalsolso sspentpent ppartart ooff tthehe ssummerummer ssparkling!parkling!

FFrancescarancesca wwonon a Naomi made it to the ccompetitionompetition ttoo mmodelodel ball, not only on time but with Katie Price at the as the true ‘Belle’ llaunchaunch ooff eequestrianquestrian cclothing!lothing!

In June, Harminder was busy with her mum, launching hundreds of balloons in support of STARS

STARS is always here offering information, support and celebrating the achievements of all members.

www.education.stars.org.uk

21

? ! H What a o t y w animal do s d Yes, by popular a d

c p e a you look like when e t ? n it ia o ! y r l o a o you get into the bath? u g z m d u o a e e demand, we have v T h n a i W t A little bear! f t c ! L e l s o e ? h o l r t h r a o w a y t h e ar t a k e b e o d e i f r y b t d b the STARS s o e d o e r d a d a a e e g t e h t k r d r B is b a a e l F e D e t th a a a ’s ou ra b ! H r e r t y d s o ’s n a t ’ a k w d f l ’ ey l a Joke Page… h n a - i h l r d v m v ld t ca o o W o u a e u e ou n yo r r s o s d y ? a u i k ? h u l s n t . a t i ! h K e s u a ? ir o c o o d t e boom boom! e k d y h c i a a e s r p e c te r h u u p i ha B t f W t do P dd K i a st yo ut h y o n W ve k a n u im b l h a o o g a k o s e o e h t n a a ? W s l a s if s r r ’d e e yo t ? a y v iv u i e e a l cr l b ha h t Thank you to Sophie who o t t o I ss s ! o e t a te y d s ap ddy Wh au he bea c ar c so kindly sent these in. r w Be be A te ith r dd a la y b pig o oa ? p r ! s i y rmint h What f peppe ? a ’s ls o W white, furry and smel ar. A polo be If you hear a good joke, and would like to share it d with STARS friends, please d email it to [email protected] d ★ ★ Congratulationsaat Sophie

STARS would like to say a big thank you to Sophie Bavington

Would you welcome the opportunity to talk with on her District Council Community Award young people who understand what ‘living with syncope’ can be like? The moderated STARS Youth for volunteering on to the Suffolk Forum, offers just this. Befriending Scheme It is free and simple to join – just follow the links from the STARS Education website (www.education.stars.org.uk).

Members are very friendly, supportive and quick Well done Sophie to respond. All messages are moderated with no contact details or full names disclosed; messages may be edited.

★

www.education.stars.org.uk

22 Don’t feel left out… have a go with the STARS ‘Pick & Mix’ sweetie quiz.

1. Annoyed the Farmer’s wife! 10. Do these belong to the gummy bears? 2. Tasty, and good for kissing too. 11. Yummy fungi! 3. Shoe fasteners for summertime. 12. Wobbly seeds.

4. On your doorstep each morning? 13. Just right in a Sunday brunch. 5. Pirate’s treasure me hearties! 14. Beep beep, noisy fruit? 6. So cuddly, but where are the teeth? 15. What dirty boys!

7. Oh, a UFO? 16. Young children just learning to walk. 8. These can make you be very quiet! 17. A powdery shower!

9. A rock pool creature 18. Very chewy and very loud!

Too cold to go out? Answer Sheet! 1. Sieve all of Challenge Why not bake a sers the ‘powders’ Choccy (flour/baking 1. Malte delicious lunch 2. Starburst powder/salt) into 3. Humbug box treat! 4. Qualityrkey Streets a bowl. 5. Roses 6. Yo 2. Cut up the butter into 7. Minstrels Cheesy Scones 8. Galaxy small squares and ‘rub Magic 9. Mars bar ations 10. Turkish Delight in’ to the powders - until 11. Black it resembles bread crumbs. 12. Celebr ) 13. After 8 14. Kit Kat 3. Grate the cheese into the 15. Tic Tacs (chocolate mixture. 16. Smarties 17. Twix 18. Buttons 4. Gradually stir in the milk – 19. Wine gums allowing it to bind together but 20. Mint imperialte mice Pick & Mix ips not get too sticky. 1. Whi 2. RedStrawberry l laces 5. Sprinkle the extra flour onto a rolling 3. You’ll need: 4. Milk bottle aucers board and roll the cheesy mixture out. 5. Gold coins 200g of self-raising fl our 6. Gummy bears It will need to be about 2cm thick. 7. Flying s ½ teaspoon of baking powder 8. Gob stoppersmushrooms A sprinkle of salt 6. Cut into circles and place onto a greased 9. Pink shrimp 10. Teeth! Coconut 50g of butter / margarine baking tray. 11. 12. Jelly beans 75g of Cheddar cheese 13. Fried egg Cook in a warm – hot oven (about 180’c) for 8 – 10 14. Tootie fruities 150ml milk minutes, or until golden brown. 15. Black Jacks 16. Jelly Tots A little extra fl our for rolling 17. Sherbert Fountain A baking tray Enjoy! 18. Drumstick

www.education.stars.org.uk

23 SUBSCRIPTIONS AND DONATIONS Your subscriptions are what keep STARS up and running. Please renew your 2009 subscription Subscriptions are a minimum of £15/$25/€25 a year. It is vitally important that you remember to renew your subscription. Without your help, we would not be able to provide our essential service to the families of RAS and Syncope sufferers. Thank you. You can type on this form and email it back to [email protected], or print, complete & post it back.

Name:

Address:

Post Code:

Telephone:

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SUBSCRIBE & DONATE £/$/€ I would like to make a donation to STARS and enclose: I have made a donation to STARS via PAYPAL at www.stars.org.uk to the sum of: I have made a donation to STARS via my CAF account to the sum of: (Please fi ll in and email back to us for identifi cation purposes) 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 from my Bank / Building Society Account to STARS (min. £2); (state amount) I have arranged an annual standing order from my Bank / Building Society Account to STARS (min £15); (state amount) Please tick the space if you agree to gift aid your subscription/donation. (Further info on next page) Tick Here: GIFT AID DECLARATION STANDING ORDER AUTHORITY Name of taxpayer: ______My Bank Address: ______Bank Address: ______PLEASE PAY: ______Postcode: ______STARS, Account: 02423406, Sort Code: 30-98-26 Please tick to allow STARS to claim an extra 28p for every Lloyds TSB Plc, 22 Bridge Street, £1 you donate, at no cost to you. Stratford-Upon-Avon, CV37 6AG

I want STARS to treat all donations I have made since 6 April The sum of: £/€/$ 2000, and all donations I make from the date of this declaration until I notify you otherwise, as Gift Aid donations. On (First Date) / 2009 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 And after this, every Month / Year ( delete) in the tax year (currently 28p for each £). I may cancel this My Account Number: declaration at any time by notifying STARS. I will notify STARS if I change my name or address. Please My Sort Code note full details of Gift Aid tax relief are available from your local tax offi ce in leafl et IR 65. If you pay tax at the higher rate you My Signature can claim further tax relief in your Self-Assessment tax return. Date Return to STARS, PO Box 175, Please print and fi ll [email protected] this form and hand to Stratford Upon Avon, Warwickshire, CV37 8YD your bank or building society. Thank you