STARS Issue 30, January 2009 by www.heartrhythmalliance.org

The uts o k c Bla rust T JANUARY 2009 : ISSUE 30 WORKING TOGETHER WITH INDIVIDUALS, FAMILIES AND MEDICAL PROFESSIONALS TO OFFER SUPPORT AND INFORMATION ON SYNCOPE AND REFLEX ANOXIC SEIZURES Dear

Or, what about your leisure centre? Libraries always welcome leaﬂets - we can provide these!

Friends of STARS

Last year many of you helped raise much needed funds for STARS during the Arrhythmia Awareness Week (AAAW) by launching eco-friendly STARS balloons – who can forget the cover of the last newsletter! STARS needs your help again!! We are playing a major part in this year’s AAAW (8th – 14th June) with the theme ’Know Your Pulse’. We will be raising awareness of the pulse as a tool to identify potential arrhythmias including syncope and ensuring that STARS is the charity to contact should you have a blackout/loss of consciousness. We have included a new STARS poster and we urge you to display it in a public place which would further our cause – a shop, a club, a library, GP’s surgery or a college notice board.

Have

If you really want to spread the word and raise money, what about a coffee morning or afternoon tea? Invite your friends and offer them STARS literature and www.stars.org.uk persuade them to pass this on to their own medical you ever fainte centres, libraries or clubs.

Do you know w hy? To find out mor e about fainting, bla ckouts, and unexplained loss of conscious ness contact STARS now…

info@stars.org.u

The Heart Rhythm Charity www.heartrhyt hmcharity.org.uk

Afﬁliated to Arrhythm ia www.heartrhythmcharit Alliance y.org.uk

www.stars.org.u k Tel: 01789 4505 64 endorsed by

Working together with support and infoindividuals, families and med rmation on Sync ical ope and Reflex professionals to offer Anoxic Seizures Regis

Many of you are parents of school children – why not approach your child’s school and hold an awareness assembly, focussing on ‘Knowing Your Pulse’, encouraging the pupils to ‘Chart Your Heart’ STARS FUNDRAISING for the week – we will have great RAFFLE Pulse Check cards to give away for Please will you support this event. STARS by selling the enclosed rafﬂe rickets? If you have younger children you 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 £100, £75 or £50. a bake sale or wear red for the day. 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 rafﬂe 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. tered Charity No.

1084898

However you want to be involved, STARS can provide FREE materials for all events. Please write or email us with details of your plans so that we can support your idea. Pippa at safe@stars.org.uk will be delighted to hear from you! Please do not forget to take PHOTOGRAPHS of your event – I want to be able to do another happy cover for our summer newsletter, as well as say a big thank you to everyone!!

I know you will all rise to the challenge and raise awareness of RAS, SYNCOPE and POTS.

Trudie

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 events@stars.org.uk in the ﬁrst 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, Stratford upon Avon London - Novotel London West, Hammersmith South West - Hilton Bristol North West - Manchester Scotland - Edinburgh North - Leeds South - Southampton Wales - Barceló Cardiff Angel Ireland - Belfast

19th March 2009

25th March 2009

15th April 2009 29th April 2009 11th June 2009 12th June 2009 17th June 2009 10th September 2009 Date TBC

STARS

Email events@stars.org.uk or visit www.heartrhythmcharity.org.uk to register.

Patient Day 2009 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 ﬁnancial 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 events@stars.org.uk. 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 ﬁrst time was prompted to write her story….

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info@stars.org.uk

So much to learn at a STARS Patient Day

am Hannah and I am 22 years old. Back in 2004 I was told I was going to be an Auntie and this was supposed to be one of the best days of my life but, low and behold, reﬂex syncope appeared in my life. From that day on I began to faint about three or four times a week and I constantly injured myself in the process. When my beautiful niece eventually came into the world I had fainted many times, but one day someone mentioned STARS. I quickly got in contact with them and they sent me loads of information on syncope. This made me realise that I can still carry on with things.

as having Reﬂex Syncope in January 2006 and started taking midodrine.

real insight into just how much research and work is being done on syncope and POTS.

I have encountered many people who cannot deal with me fainting and have had many discussions with the university about it. Now, four years later I am doing really well with my work. I have changed medication and haven’t fainted for a month. My boyfriend Philip, and my family and friends continue to support me all the way; my university are very supportive also, and help me out any way they can. I have even decided to write my university dissertation on whether young people with syncope should be given support to assist their education, which I am currently working on. STARS have been a huge help and I cannot thank them enough.

“I couldn’t have been more relaxed!”

So when the chance came up for me to meet others in my situation at the STARS Patient day, last October, I got myself a ticket.

“ A real insight into just how much research and work is being done on syncope and POTS.” In September 2005, whilst I was still having tests and trying to ﬁnd a diagnosis, I was due to start at the University of Worcester, 200 miles away from my family and friends. I moved into halls of residence on campus a couple of weeks later, still fainting for no apparent reason. Luckily for me, my family and my niece Sophie were constantly on the phone reassuring me and the university was helpful and supported me too. I struggled a lot to deal with the fainting, but was then diagnosed

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Leaving my house at 6am to go to Birmingham was the most exciting trip I have taken. When I arrived there were lots of people and I was slightly nervous, but after receiving my delegate badge and bag with information in it, I couldn’t have been more relaxed. I was lucky enough to meet Rebecca Smith from STARS US and during the presentation I found myself taking a lot of notes and getting carried away. The speakers were fantastic and everything was easy to understand and it gave me a

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The brilliant people at STARS and the medical professionals answered many questions from patients and everyone left with a smile. I will be attending next year’s conference and would encourage anyone to go along, if only to meet others in the same situation and with the same condition. I would just like to thank STARS for letting me know about the conference and I will hopefully see you all this year. Hannah Nicholson Manchester Over 2600 people attended the Heart Rhythm Congress 2008, including medical professionals, patients and carers and other charities. Now, in its fourth year, this annual conference has become one of considerable magnitude and we feel that the time has now arrived for our own members to have an exclusive patients day (how it was many years ago before we became part of the International Heart Rhythm Congress!). Please, therefore, put this date, Sunday 18th October 2009, in your diaries and support us in this decision. We will still have top class doctors and medical professionals presenting the sessions and they will be available to answer any questions you may have. If there is a particular topic you would like to see covered, please email jenni@stars.org.uk as soon as possible so we are able to book the best speakers for the sessions.

info@stars.org.uk

Fallin

Registered Charity No. 1084898

is is not not an an age age old old problem problem STARS is delighted to announce the ‘Syncope and Falls in the Elderly’ project (SaFE) Why is there a need for the SaFE project?

older persons are poorly managed and investigated.

Syncope (fainting) is a signiﬁcant cause of falls among older adults. Falls and blackouts are very common with advancing age, and together they are one of the most common reasons for adults over the age of 65 to attend accident and emergency (A&E).

One carer, Chris Harmer, contacting STARS recalled -

As quoted by Professor Rose Anne Kenny, Head of Department of Medical Gerontology, Trinity College, Patron and Trustee of STARS, “The consequences of syncope have a greater impact on older compared with younger individuals. There is a greater risk of serious injury and fractures, increased rates of hospitalisation, loss of conﬁdence and reduction of independence.” Syncope is estimated to account for 10-20% of attendees to casualty who have suffered injurious falls. However, despite the prevalence of syncope in older adults, it is often the case that blackouts in

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“In her early eighties, my mother started to have “funny turns” when she became giddy and unsteady on her feet. She was given Stemetil, which is often used to treat vertigo. Things did not improve. Her doctor doubled the dose to the maximum adult dose. She became more ill, anxious, and felt awful. Her GP realised instantly what had happened and took her off the Stemetil, but she was never quite back to her old self. “Another problem was losing consciousness in the newsagents and at the hairdressers. She was ambulanced to A&E on several occasions. The Geriatrician started a range of tests and, following visits to cardiology, put her straight on very strong medication to treat an arrhythmia. No other antiarrhythmic medication had been tried first and this particular drug carried a warning against being

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prescribed to elderly patients. Fortunately, we took her to a GP who gave us a second opinion and prescribed a less severe medication.” Chris’s story is a prime example of a case where syncope has been poorly managed.

What will STARS achieve? STARS is embarking on a new project which aims to promote accurate diagnosis and treatment of syncope and raise awareness of its link to falls in the elderly. If more people are made aware of the link between syncope (blackouts) and falls, the root cause could be treated and recurring falls prevented. We will be developing literature speciﬁcally providing information, support, and advice on syncope in older adults. We aim to raise awareness of SaFE amongst older adults, their families, care home workers and healthcare professionals.

info@stars.org.uk

Why does syncope pose a major challenge for diagnosis in older adults? 1. Older adults may fall because of syncope (transient loss of consciousness), however they may be unable to recall having lost consciousness because of retrograde amnesia (an individual who loses memory for the time period just prior to the injury). As a consequence, a large number of blackouts will be recalled as falls, resulting in some older people never receiving the proper heart, blood pressure and nervous system assessments for blackouts. 2. Falls are often seen as part of the process of growing old. This is incorrect. ‘Falling is not an age old problem’. Falls and blackouts should be investigated carefully and similarly to other age groups. 3. Fear. Older adults may worry about going to a GP or to casualty for fear of losing their independence after a fall. If the root cause of a fall is diagnosed it can be treated and further falls prevented.

What has STARS discovered so far? Over the last few months STARS has made contact with healthcare professionals all over the UK, asking for their specialist support and advice. Thank you to all those who have contributed to our new project. STARS has produced surveys to help establish the current level of awareness (amongst medical professionals and patients) on the link between syncope and falls in older adults. Completed surveys are coming in as we speak and we are collating results. In addition, we are currently assessing the level of interest from a range of care homes on the provision of support and information on syncope in older people. Results so far highlight the desire to know more and we hope to introduce support, information and advice to care homes in the near future. In September, STARS made its ﬁrst appearance at the annual International Falls and Postural Stability Conference, in York. The audience consisted of a range

of medical professionals with an interest in falls prevention in the elderly. STARS was received enthusiastically by physiotherapists, occupational therapists, nurses and consultants who all agreed there is a need to raise awareness of the link between syncope and falls in older adults. In October, STARS highlighted the Syncope and Falls in the Elderly (SaFE) project at the annual Heart Rhythm Congress www.heartrhythmcongress.com during the Syncope Symposium. The conference proved a great place to discuss the project with medical professionals who have a specialist interest in syncope. We have been gathering your views on what you would like to see available for older adults experiencing syncope. I would like to say thank you to healthcare professionals, patients and care home staff who have contributed. If you are interested in our SaFE initiative please complete our patient survey on line. Or phone STARS for a survey to be sent. Your feedback is vital 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 have a syncopal event. At least 10% of syncopal events result in fractures.

We want your perspective. Please contact STARS if you know anyone who has fallen following loss of consciousness. Or send your experiences and views to STARS for the attention of Pippa or email safe@stars.org.uk We look forward to the launch of new educational literature for SaFE in 2009.

Syncope and falls are the most

common reason for older adults to attend the accident and emergency department.

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info@stars.org.uk

“A Job” is infinitely better than “No Job” with the loss of my driving licence, came the loss of my job. District nurses can’t travel to many patients without a car! In retrospect, this was the push I needed to accept that, driving licence issue aside; my nursing role was untenable in my current state of health. I continued to keep in contact with my line manager at the Primary Care Trust and she followed procedure while we waited a frustratingly long time for Occupational Health and cardiologist reports. It was quite clear that we were now in the realms of re-deployment. By law, the employer has to try to offer an alternative role, if there is one

Anita Kiernan

used to be a community nurse. In September 2007, following deterioration in my long-term health condition (then treated as “postural hypotension and benign sinus tachycardia”); I had another collapse at work and was sent home until I could see the Occupational Health team. This was the beginning of the end for my nursing career – a job I loved and still miss. I was devastated and fought to come back to work. My employer did make the temporary “reasonable adjustments” as required under the Disability Discrimination Act, to allow me to work in clinics where I would not be alone. However, at another tilt test in October ‘07, I was given a diagnosis of postural tachycardia syndrome (POTS). I can remember driving home later, knowing it was probably the last time I might be allowed to drive, and aware that

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interview. Many of the application forms asked for information about disabilities; I cannot prove anything about why I was not selected for interview, but received no feedback when I requested it. The longer I was off sick, the more I started to lose conﬁdence in myself and my abilities. I also felt my choices were now hugely limited by my disability. I tried to stay as healthy as possible, physically and mentally, and so I made myself go for a short walk every day. I tried hypnotherapy, relaxation techniques and private therapy. I was lucky to have amazing support from my husband, friends and family. I logged on to the STARS message board every day and found huge comfort in knowing others understood my worries and could help answer my questions. In January 08 I ﬁnally managed to have a meeting with my line manager and an HR

“The longer I was off sick, the more I started to lose confidence in myself and my abilities.”

“The longer I was off sick, the more I started to lose confidence in myself and my abilities.” available – not necessarily of the representative, with my Union Rep same level of responsibility or wage, only what is available and suits the employee’s skills. Naturally I applied for other jobs while I was off sick as there was a very real possibility that there wouldn’t be a suitable role with my current employer. I got good feedback from an interview I had with a private ﬁrm, although I didn’t get the job. However, there were many other roles for which I was very well qualiﬁed but was not invited for

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present. It quickly transpired that my options were to drop 2 to 3 pay and responsibility grades. Despite the wage decrease, I decided that “a job” was infinitely better than “no job”, and that returning to work, at whatever level, would help me re-build my confidence and increase my office-based skills. So I applied for one of these roles and had an informal interview. The lovely manager felt that there must

info@stars.org.uk

be a role more suited to my qualifications and experience – so she looked at the vacancy list, found an office job at my previous level and arranged an interview. Despite suffering pre-syncope spells during the interview, I was offered the post subject to a short probation period. I was so nervous when I started work again, partly as working in an office job was new to me, and partly because I couldn’t expect my new colleagues to help and support me as my friends always did. It’s not easy trying

Access to Work, which is afﬁliated to Job Centre Plus, to help people with disabilities get back to work. I believe I was helped by the fact that I was prepared to consider what I can do, rather than what I can’t, even when that meant giving up my nursing career and some of my independence via the driving licence. The happy news is that a year after I ﬁrst went off sick I am now very settled in my job and my health has improved somewhat. I still can’t do all the things I used to do, but I am out of the worst phase (for now - I

“I was prepared to consider what I can do, rather than what I can’t...” to make a name for yourself in a new career when you collapse or sway “drunkenly” on the way out of meetings! However, my colleagues have been extremely supportive and so has my manager: he changed the ﬁling cabinets so I could avoid bending and crouching, ordered a fan to cool my side of the ofﬁce and is supportive of time off for medical appointments. I also received invaluable support from

know it often goes in peaks and troughs). I recently saw an eminent professor in London who plans to carry out more investigations in order to nail the diagnosis and look at potential treatments again... but I’ll have to wait a year or so as I found out recently that I am expecting a baby! I know I will have many more ups and downs and will need plenty of support and advice from STARS and its members on

this particular journey to start a family, but I am so much more confident about dealing with it all than a year ago. I have been truly fortunate that I have such an understanding manager and a supportive employer - I know everyone is not so lucky. I am also aware that many people with NCS, POTS and other conditions collapse more frequently than I do and are more incapacitated afterwards, which may make working much more difficult and a potential risk for an employer. So I just want to wish lots of luck to anyone else going through a similar situation. Keep positive, find out your rights, be prepared to adapt and change, and keep believing in yourself. You have skills and experience which will be valuable to an employer in some capacity – and you may even be able to work from home or start your own business, or work freelance if that suits you better. Don’t give up hope! Anita Kiernan 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 ﬁrst 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

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info@stars.org.uk

Another Diagnosis for Dr. Google!

suppose when writing things like this you have to tell people some basic facts otherwise, as the story rambles on, they imagine a picture of the writer which is totally alien to what they are.

So in the way I used to write an essay at school, my name is Ron, I am 55 and a half and until I fell foul of VVS nothing fazed me. I was as they say bullet proof, or so I thought. I was on a train to London early one morning in November, it had been raining and as I sat into my seat the warmth of the carriage and its many occupants was only equal to its humidity. I got out my paper and within 5 minutes I had my ﬁrst Vasovagal pre-syncope attack, although I didn’t know what it was at that moment.

“I was ready to do battle with doctordom, once and for all” Intense dizziness and nausea, I couldn’t see, there was a buzzing in my head and I was sweating heavily.

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The doors closed at the next station and I was imprisoned on the train for half an hour terriﬁed out of my wits. I thought I was having a heart attack and I was going to die, yet I felt such an idiot, and so nauseous I convinced myself that this was way too embarrassing. I wasn’t going to die until I got off the train in London where I had this vision of me stumbling off the train and collapsing like a dying swan on the platform. But I didn’t, and I tried to shrug what had happened off.

She also referred me to a cardiologist, this frightened me somewhat as I was now convinced I had had a heart attack at least 3 times and she looked happy about it. So what does one do under these circumstances? Resort to Google. The ﬁrst word I came across was syncope, I looked this up and saw a reference to Epilepsy, shock horror, I would rather have a heart attack because they can ﬁx them can’t they?

“I don’t hide behind the disability label but I don’t want to be beaten up just because I have one.” After Christmas I was in the theatre and just after the lights went down I had another attack, and shortly after that in a cinema, but I wasn’t prompted to see anybody about it until it started to happen in a restaurant and then only because I had to get out of the place before I paid the bill which annoyed my wife intensely. My GP suggested I might have Vertigo and referred me to the ENT department of my local hospital. Well, after a student doctor managed to drop me off the ENT torture table because I am a heavy 6 ft 3 tall and he was a slight 5 ft 6, the accompanying consultant asked some questions and looking really pleased with herself said “I know what’s wrong with you, it’s not an ENT thing but we will send you for an MRI which will be negative just to prove I am right.” Well it made sense at the time.

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Eventually I found VVS and when I told the cardiologist, he then let fly about all his years of training and heart ache and personal sacrifice and here yet another patient had diagnosed himself with Dr. Google. I was put on Propananol which on one hand improved me a bit yet I was lethal behind the wheel of a car. My wife didn’t like them either as I now wasn’t frightened of her as my flight or fight mechanism was disabled. Discharged to my GP he took me off these and decided a course of mind bending anti-depressants. “This may take up to 10 years to produce results.” At this point I decided that I would never make a hardened drug addict as I didn’t like the side effects and stopped them, as I was sure I could conquer this on my own.

info@stars.org.uk

But I couldn’t, and I went back to my GP’s surgery but fate played its hand and I was destined to see another GP who would change my life. I couldn’t sit in the waiting room as it triggered an attack and instead of shouting out the window when it was my turn I was left in the rain stomping up and down way past my appointment, so when I got in I was ready to do battle with doctordom, once and for all. The doc rocked back in his chair, put his hands behind his head and said “Lets go to the expensive end of the market, and get a state of the art betablocker. If not we will spend the

next lifetime ﬁnding you something that works.” Immediately the beta-blockers worked as long as I did some exercises occasionally and upped my salt and liquid intake. I still can’t get into a train or a stuffy location without the terrors but I understand this will be something of a work in progress until my mind forgets what VVS feels like. My employer on the other hand has been despicable in his attempts to get rid of me, which is leading to an appearance at an Industrial Tribunal after they ﬁnally sacked me

as I couldn’t do my job as before. But since then I have started my own business which keeps me away from my triggers and I am happierthan I have been for a long time, but let me say this one thing about me as a message to unsympathetic employers of those who become disabled. I don’t hide behind the disability label but I don’t want to be beaten up just because I have one. I didn’t choose it; it came and stuck itself on me. Ron McAlpine Surrey

Flying with RAS

aking the decision to go on holiday was not too difﬁcult considering that our daughter Shelby suffers with RAS.

Shelby was ﬁrst 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 to come round. As I looked up, the whole plane was looking at me as if I had just shot her!!!!! Their faces were ﬁlled with fear and the stewardess just stood there speechless until I could explain her condition.

One of our main concerns about the holiday was the travelling and the early morning start. As parents we had discussed the best way to deal with it and decided that we would put her to bed as normal, and when we needed to leave for the airport, just transfer her to the buggy where she could continue to sleep until we arrived at the airport. This proved to be a good decision as she continued to sleep and when we arrived at the airport at 7am she was as good as gold!

Once she had come around, she fell asleep in the sky cot till we were about to land, which was approximately one hour later. When we landed she was very clingy 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 started to affect her behaviour as she became hungry and tired. We gave her a snack and walked up and down the place but what was required was a sleep (fatigue being one of her triggers). As we also have a ﬁve month old son, Levi, we had a sky cot and tried unsuccessfully to put her to sleep - she was more interested in what was happening on the plane!

The rest of the holiday was perfect and Shelby had a wonderful time. Looking back I still think we would have gone, even knowing about Shelby’s attack, as you cannot live life around RAS. The only change we might contemplate is not to have such an early ﬂight as Shelby was far better on the return ﬂight in the afternoon/evening. However, it was a well worth while 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 had an attack and fell over. Without a second thought

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Daniel and Lauren Matlock Hertfordshire

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info@stars.org.uk

ORDER YOUR PACK NOW!

SUBSCRIPTIONS WERE DUE ON 1 JANUARY 09

STARS Syncope and RAS Alert Cards are now available in packs of twenty, at the low price of just £1.00

Only £15 / $25 / €25

Seizures

anoxic dical st And Reﬂex Syncope Tru ilies and me ividuals, fam ether with ind port and information on “working tog sup er off ls to c seizures” professiona d reﬂex anoxi syncope an

0564 (0)1789 45 Admin: +44 62 0800 028 63 Freephone: stars.org.uk Email: info@ .uk stars.org Web: www.

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

Seizures

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oxic atening) th ReﬂexsyAn NOT life thre I suffer wi lep and is nected to epi (this is not con e I am safe sur ke ma Please ry position in the recove Please put me wait for me tly to me and or 2 mins) Please talk quie rmally only 1 sciousness (no to regain con EDIATELY: CALL IMM If injured or

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

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

- 999

If your subscription is overdue, please remember that we rely on donations and subscriptions to maintain the level of care and support that STARS currently provides. A STARS subscriber receives a password that gives access to the Syncope message board and is able to download all our leaflets whenever required. You can find 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 ﬁrst posting will be answered with a stampede of ‘welcomes’. For some of our members it is a lifeline at times, for others it is where they can share the excitement of a wobble-free day! We look forward to welcoming you!

If you would like a copy of the STARS US newsletter, please contact Rebecca at rsmith@stars-us.org

REFLEX ANOXIC SEIZURES

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

PIPPA (Left) - I have been with STARS since the end of June after graduating in History from the University of Birmingham. I have been involved in the research and development of the new SaFE project for STARS. You can contact me at safe@stars.org.uk

SYNCOPE (pron: sin-co-pee), is a result

HEATHER (Right) - I joined the charity in October having graduated from Birmingham City University with a degree in Media Photography and Journalism. I help Jenni on the STARS helpline and have responsibility for fundraising and the newsletter. You can contact me at heather@stars.org.uk

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

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info@stars.org.uk

FUNDRAISING STARS

Thank You!

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 pupils and staff at The King’s School Gloucester who made a wonderful surprise donation of £206.83

Stephi Wallace who volunteered to collect a cheque from George Stephenson High School, Killingworth, North Tyneside for the magniﬁcent sum of over £1500. Thank you!!

The Glorious Fourth! Being a sporty and competitive type of guy, I thought it would be fun to run a sweepstake at work for our baby’s birth weight. This idea quickly escalated into three such competitions – one for the weight, one for the date and one for the time of day. All we knew was that the due date was 12 August.

I decided to use it as an opportunity to raise awareness for STARS as I tend to ﬁnd 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 jo@stars.org.uk 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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info@stars.org.uk

Big Sur Marathon i ‘m a 34 year old Territory Manager for a medical company and I like to try and set myself a challenge each year. This year I decided to run for STARS as my sister in law, Anita, has POTS and has lived with the condition for the many years I have known her. As a charity you were a great source of support for her when the condition meant that she had to give up Nursing and her driving licence in a short space of time. So as a consequence I wanted to try and do something that would allow you guys to continue to support others who need your help.

Where I live is flat, like Holland, it’s very flat. Where I am running is hilly, very hilly. I’ve since learnt that there is over 1000ft in elevation and 16 hills, one of which lasts over a mile on the incline and climbs for over 600ft. Oh, and its right in the middle of the race. So I have a healthy level of fear for the task ahead. Between now and then I will have run over 650 miles, worn down 2 pairs of trainers, ran many times with a hangover, been chased by a dog (at least once) and five times a week donned a very fetching pair of Lycra leggings. Most importantly I hope to have raised some money for STARS.

A POTS Marathon

The Big Sur Marathon on April 26th is my chosen challenge, as I write this it’s December 2008 and that date seems a long way away. On January the 4th I will have started a 16 week programme that if all goes to plan will get me round on the day. I wanted to do something a bit different and read in a running magazine that the Big Sur Marathon is listed as one of

The thing with this sort of physical challenge is that I get to choose to do it. And if I can raise some money at the same time, excellent. The people I really admire are the people, like “I reall admire people, like Anita, who face the challeng Anita, who face the challenges that theircondition conditionpresents presents every every day…now that takes determ their day and overcome and that will be all the inspiration I need…” them each and every time. Now that takes determination and that will be all the inspiration I need when running up those hills.

“I really admire people, like Anita, who face the challenges that their condition presents every day… now that takes determination and that will be all the inspiration I need…”

the races you should really run as it takes part on a beautiful location on the Californian Pacific coast in Monterey. Well that was enough for me, I signed up, booked flights, looked at car hire, and made a list of 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 floor 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

drome Long QT Syn

ari ty Rhy thm Ch The Heart osis, rstanding, diagn r unde Promoting bette for individuals quali ty of life treatment and arrhy thmias with cardiac

ndrome – Long QT Sy af let at ion Le Infor mmc rity.org.uk Patient ear trhyth ha

The latest patient information leaﬂet available for our members is Long QT Syndrome. Written and approved by our panel of International medical experts, this booklet is for anyone who may be affected by this relatively rare condition.

If you would like a copy contact either jenni@stars.org.uk or heather@stars.org.uk

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On the STARS website there is an inspiring story by Marian Damgrave. Marian is from the Netherlands but has also provided a translation for our Dutch members. The article can be located in the Case Study section http://www.stars.org.uk/html/case_studies.html

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info@stars.org.uk

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 reﬂected 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!

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info@stars.org.uk

FACE TO FACE WITH TRUDIE LOBBAN Chief Executive of STARS Pippa Mawle and Heather Peebles, two of our young graduate recruits, were fortunate enough to catch up with Trudie between her travels to ask her about 2008 and her hopes for 2009.

Pippa: You have been travelling and lecturing all over the world. Where has STARS taken you over the last year? Trudie: During 2008 I travelled to ﬁve continents. The New Year began in Australia, then onto Sweden, Paris, Japan, San Francisco, South Carolina, Italy, Germany, South Africa, Belgium, and Rome and I ended the year in Barcelona. I was presenting to patients and carers as well as industry and medical professionals, but at all times I was able to spread the news of STARS, the work we do and the services we provide. South Africa was really interested to learn about our Rapid Access Transient Loss of Consciousness Clinics (RATLOC) and Japan is asking for our medical literature to be translated – a compliment to us all and a reﬂection of the results we are achieving!

Heather: How has STARS grown over the last year? Trudie: STARS grew rapidly during 2008. Due to constant demand for advice and guidance from sufferers of syncope throughout the USA, we launched STARS US in October 2007. They are now organising ‘Syncope Awareness’ days to be held all over America during 2009. For the future we hope to write

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guidelines to establish a STARS support group in every country, but we must never lose sight of the fact that there is still more work and improvement to be made in the support, information and advice we provide for our members in the UK. Our Information and Helpline in the UK receives over 125 new enquiries every month. If you multiply that by twelve, STARS has over 1500 new members each year. But remember, not only do we support these new members but we also continue to provide advice, comfort and reassurance for our existing members. We are on call 24/7!

Pippa: Which celebrities have STARS been linked to in 2008? Trudie: Sir Elton John joined Sir Roger Moore as a patron of STARS. Some of our members may have spotted a mention of STARS in Sir Roger‘s autobiography, ‘My Word is My Bond!’ I was lucky enough to be invited along to meet him when he was in Cheltenham for a book-signing. I took Rebecca Smith, our Executive Director of STARS in the US with me. He was absolutely charming and is so supportive of STARS.

Heather: When looking back over the year, was there a memorable occasion during your travels that sticks in your mind? Trudie: A very special moment for me was the magnitude of interest that STARS received at the annual Heart Rhythm Society meeting in San Francisco, the largest heart rhythm conference in the world for allied professionals. I struggled across the Atlantic with two

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Trudie with Sir Roger Moore KBE oversized suitcases full to the brim with STARS literature. There was a stampede to the STARS information desks at the conference and we left with only two business cards. The demand for STARS support groups in San Francisco, California and Texas is huge. It highlighted to me what a long way we have come since the launch of STARS in 1993.

Pippa: What do you consider to be STARS’ greatest achievement or development? Trudie: One of the great success stories for the charity was the launch of the ‘Blackouts Checklist’ which is designed to help patients and medical professionals work together to reach a correct diagnosis in the event of loss of consciousness. It was prepared with the guidance of STARS Medical Advisory Committee. The checklist has proved the most sought after material that we offer, providing information that is needed by both medical professionals and patients alike. It has been translated into seven different languages and consultants are even asking GPs to complete the checklists prior to referral!

info@stars.org.uk

Hot on the heels of this triumph has been the education project, ‘Shine a Light on Education’. This provides information and advice for parents, teachers and sufferers on how best to manage syncope in a learning environment. The success of the ‘Shine a Light’ project can be seen by the fact that across the UK educational establishments, carers and pupils diagnosed with syncope continue to contact STARS for information and guidance.

Pippa: Everyone expects STARS to have a new initiative in the pipeline, so what new projects can we expect to see from STARS during this year?

Finally, over the last few months our average staff age has dropped by twenty years!! We have recruited new university graduates to develop projects at STARS. Their contribution has been of a high standard and we, as a charity, value their research and ability to learn and bring forth new ideas.

Trudie: We will not disappoint! 2009 will see the exciting launch of the campaign ‘Syncope and Falls in the Elderly’ (SaFE). Over the last few months STARS has been researching the link between syncope and falls in older people. Syncopal events and falls in older adults are a major cost burden for the NHS. Syncope is estimated to have a prevalence of between 10/20% in A&E attendees who have had injurious falls. The most common age group for blackouts to occur is in the over 70 year olds. However, despite this high number of occurrences, syncope poses a major challenge to investigation, diagnosis and management in older people. The STARS SaFE project aims to promote accurate diagnosis treatment and better quality of life for older adults experiencing unexplained loss of consciousness. We intend drafting educational literature to raise awareness of the link between syncope and falls for the elderly, their carers and medical professionals in the near future.

Trudie: Demand is ever increasing for information, support and advice for Postural Orthostatic Tachycardia Syndrome (POTS). STARS will be developing a section on its website for this unrecognised and unfamiliar condition. Dr Blair Grubb, the world’s leading authority on POTS has contributed a number of articles for this section.

Trudie: STARS’ support and encouragement for Rapid Access Transient Loss of Consciousness Clinics will be strong during 2009, and will be highlighted by the launch of the Rapid Access T-LOC website by the end of February. The website, to be hosted by STARS, has been designed for medical professionals to support them in the setup and management of clinics which will assist the rapid and accurate diagnosis of patients suffering from unexplained loss of consciousness. This will

Since this initiative was launched, we have organised STARS Information Representatives (SIRS) to provide support for this campaign. To date 1000 information booklets have been sent out following requests, and 15 SIR presentations have been made to nurseries, schools and colleges, with ten more pending and requests coming in weekly.

Heather: Because I help Jenni with the helpline, I am always taking calls from sufferers of POTS. Will we be doing anything in the future to help sufferers of this debilitating condition?

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Heather: What other developments will there be on the STARS website?

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be of beneﬁt to all our members seeking a diagnosis in the future. As I alluded to earlier, we are working on a POTS website to support the ever growing number of sufferers, as well as provide information for medical professionals, many of whom know relatively little about the condition.

Pippa: We all know you are looking for ways to improve the support we can give our members. What are your hopes for this year? Trudie: I would like to improve the funding for STARS to update literature for patients and healthcare professionals and to support the manning of the information helpline. A further area for improvement would be to encourage more volunteers to assist with the ‘Shine a Light on Education’ project. We receive enquiries weekly from schools asking for information and advice on managing Reﬂex Anoxic Seizures. We need support from more STARS Information Representatives (SIRS) to go into schools to explain how to support our young sufferers during the school day. If there is any volunteer who would like to be trained in this area, please email jo@stars.org.uk. We need volunteers from all over the country! Trudie: Now on a personal note, 2008 was a devastating year for me and my daughters, Charlotte and Francesca (both of whom work voluntarily for STARS), but the support and kindness shown by patients and medical professionals has only reinforced my passion for STARS. This charity needs to be bigger and stronger for the work to continue for many years to come.

info@stars.org.uk

POTS, PREGNANCY AND BABY three months to be weaned off all the medication for my various health problems. Coming off the beta-blocker I took for my POTS meant that I went back to feeling lightheaded every time I stood up, and fainting even more frequently than usual. It took some time before I got pregnant, so for a while it seemed like I was putting up with

MAKING THAT DECISION When you suffer from POTS or any other fainting disorder, the decision to try for a baby is not straightforward. I faint at least a few times a week, I am too ill to work, I had to give up my driving licence because of my fainting, and I use a wheelchair outside the home because I can only walk a few yards. My husband, Simon, and I had a lot of questions and worries about how on earth I would be able to cope with looking after a baby, when I can only just look after myself. We waited a few years in the hope that my health would improve but it didn’t. Eventually, I became so depressed at the prospect of a life without children that Simon and I decided to start trying anyway.

“How on earth would I be able to cope with looking after a baby when I can only just look after myself” the extra symptoms for nothing but eventually, with the aid of the fertility drug Clomid, I got pregnant.

COPING STRATEGIES Because I tend to faint with little or no warning the most difﬁcult and, indeed, expensive thing about pregnancy was trying to minimise the number of times I fainted to reduce the risk of injuring my baby. Stairs are one of my worst triggers, even though I crawl rather than walk up them. Before I got pregnant we had part of our garage converted into a downstairs toilet and shower room so that throughout pregnancy I could come downstairs in the

“The other difficult thing about pregnancy was coping with other people’s attitudes to me becoming a mother.”

The ﬁrst challenge was to come off medication that might be harmful to an unborn child. It took me

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fact, I stopped doing anything that required any more effort than sitting still. If I had been able to do more before I got pregnant, I would have found pregnancy very boring and lonely by comparison but I was already used to solitary daytimes and actually quite enjoyed spending time just talking to my ‘bump’.

morning and not go back upstairs again until I went to bed at night. I also had to stop doing housework and start paying a cleaner. In

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My inactivity paid off because, although I still had tachycardia and my blood pressure was low throughout pregnancy, I fainted far less frequently than I normally do. Of course, if Simon and I decide to have another baby, pregnancy will be more risky because, with a toddler to look after, I won’t be able to spend my time sitting around doing nothing. However, we’ll cross that bridge when we come to it. The other difﬁcult thing about pregnancy was coping with other people’s attitudes to me becoming a mother. A lot of people said things like; “You can’t look after a baby. What will happen to it when you faint?” Even worse was the attitude of Social Services who thought that my fainting would pose such a danger to my baby that they threatened to put her on the ‘at risk’ register unless I agreed to make sure that I had someone else with me 24 hours a day once she was born. Having people question my ability to care for my baby reinforced my own fears about how

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

I would cope. However, before I even got pregnant, I had thought a lot about what I could do to keep our baby safe and I knew really that she should be pretty safe as long as I did everything with her at ﬂoor level and had someone else do the things that I couldn’t safely do for her. Simon and I had to budget for me to have some help for a few hours a day and, since Social Services weren’t prepared to contribute towards that, they had to accept that for most of the day I would look after our baby alone.

THE BIRTH Bridget was born by caesarean on 19 July 2006, weighing 5lb 8oz. Whilst having POTS doesn’t necessarily mean that a caesarean is needed, I faint so easily that it seemed unlikely that I would be able to give birth without fainting at every push. As it turned out, Bridget was breech so that made the decision to go for a caesarean even easier. Apart from being admitted to hospital the evening before the delivery so that I could have a couple of bags of intravenous saline overnight to prevent my blood pressure dropping with the spinal anaesthesia, I didn’t need any other special precautions for a caesarean delivery and recovered quickly.

BEING A MUM Parenting with POTS has raised quite a few practical issues, some of which Simon and I had been able to plan for before Bridget was born and others we have to resolve as we go along. Doing everything with Bridget at ﬂoor-level and avoiding ever carrying her while

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I’m standing has been easier said than done. Careful choices of baby equipment have helped. For example, we chose a cot with a side that can be dropped right down and un-

she was in a lot of pain due to severe gastro-esophageal reﬂux and I felt powerless to help her because I couldn’t walk her up and down or take her for a drive

“If I had to recommend one thing for parents who have to do everything on the floor because of fainting; it would be DIY-type knee pads!” derneath, so that I can sit or kneel on the floor to lift Bridget into and out of it. Instead of a standard high chair, we bought one that can be used as a ‘low chair’ so that I can put Bridget into it without standing, and then sit or kneel on the floor to feed her. Once she reached three months Bridget was old enough for me to start using a buggy to move her around downstairs but, until that point, I had to walk on my knees. I still spend a lot of my time on my knees when I’m with Bridget to minimise the chances of my fainting and falling on her, so much so that if I had to recommend one thing for parents who have to do everything on the floor because of fainting; it would be DIY-type knee pads! It has been harder to deal with the emotional side of being a parent with POTS. Parenthood for me is very much a compromise between what I would like to be able to do and what I actually can do. There are some things that I simply can’t do for Bridget that healthy parents take for granted and it has been very hard to come to terms with that. Whilst I can help with bathing Bridget, I can never risk bathing her alone, nor can I carry her upstairs, which means that she has a much later bedtime routine than other children because we have to wait for Simon to get home from work. When Bridget was tiny,

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to soothe her. I can’t take Bridget out for walks in her pushchair and we are rather isolated because we can’t get to baby and toddler groups. Instead, Bridget goes to nursery once a week to enable her to interact with other children. However, there are a lot of things that I can do for Bridget. Because I can’t work, she has my undivided attention all day. I was able to breastfeed her until she was 13 months old, which seemed to have the added beneﬁt of limiting the severity of my POTS symptoms throughout that period. Although I can’t risk using the cooker, I use the microwave to provide Bridget with healthy home-cooked meals. I play with her, read and sing to her and even take her to a parent and baby swimming class, albeit with paid help to get there and to dress her afterwards. Although I am disabled, I am still Bridget’s primary caregiver. I look after her on my own for 10 hours a day. I entertain, educate and comfort her and, although chasing after a toddler all day doesn’t help my POTS symptoms one bit, being Bridget’s mum brings me so much joy every day that it is deﬁnitely well worth it. Clare Martin Buckinghamshire

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

ENJOY EACH DAY!

y daughter Amy, who is now 13 years old, started to have blackouts when she was eight and half years old and was only last year diagnosed with neurocardiogenic syncope. She has never had more than four seizures a year but they were very frightening episodes.

Last year she had a tilt table test at the Children’s Starship hospital here in Auckland, New Zealand. When she blacked out on the table they discovered her heart stopped. This year, during routine tests which included a reﬂex test, it was discovered that her reﬂexes were more than they should be and so an MRI scan of her head was

“…take heart that children are so resilient and accepting and enjoy each day as we know not what tomorrow brings.” booked. The scan revealed a tumour under the front of Amy’s brain which was attached to the brain lining and the carotoid artery. Extensive worldwide research by her team of doctors found there was no recorded medical documentation of the same existing condition, so Amy became the first person to suffer a tumour of this kind. We were still trying to come to grips with her diagnosis of neurocardiogenic syncope and the fact that the doctors had recommended a pacemaker to help this. In June 2008 Amy had the first of six operations to try to get rid of the tumour. At first the surgeon was going to do a Craniotomy to access the tumour but consulted an Ear Nose and Throat surgeon who said he could access the tumour going up through the nose. We weren’t to know that it would take this many operations to get the tumour to a manageable size and, just before

the sixth tumour operation, Amy went into hospital to have her pacemaker ﬁtted and is now doing very well. We are immensely grateful that she was given a pacemaker as many of the medical procedures have brought on syncopal episodes. It has been a very black year for Amy but she is coping remarkably well and has such a lovely, gentle accepting nature. Amy has to live with both the tumour and syncope until such times that the medical profession develop advanced methods of tumour removal. To all out there who are experiencing bad times with their precious ones, take heart that children are so resilient and accepting and enjoy each day as we know not what tomorrow brings. Lee Fitzsimmons 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 ofﬁce 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 ﬁnding ‘a Trudie’!!! Trudie with Ryoji Noritake and Pippa Mawle

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

STARS Youth Newsletter

TWINKLERS!

I N S I D E

A Twinklers Topical Teddy Bear Colouring Helpful fundraising tips! Choccy Challenge Pic ‘n Mix Quiz ! Cheesy Scones Recipe Jokes www.education.stars.org.uk 19

Choccy Challenge 1. 2. 3. 4. 5. 6. 7. 8. 9. 10. 11. 12. 13. 14. 15. 16. 17.

Help STARS and have FUN! Could you make a difference and help fundraise for STARS? The success of STARS Education project has lead to increasing requests for an informative, supportive DVD. In 2009, STARS would like to raise funds to make this possible… could you help?

18. 19. 20..

Do these wear a cross? Sudden explosion! Such a noisy critter. None of your riff-raff living here! Smelling so sweet? Linked to cricket, perhaps? Will these make number one? ‘To inﬁnity and beyond’, a universe away! My mum’s local! An Eastern treat Voodoo! Birthday parties galore! Too late for little ones! Feline equipment! Noughts and Crosses, almost. A* students Always on the fence, can never decide! So ﬁddly to fasten. A toothless drink? Royal herb? Answers on page 23

Helpful Fundraising Tips 1. Timing

Below are some tips for Fundraising Frolics! However, if you are like me and would welcome a little help, why not try out the ‘Choccy Challenge’. Suitable for all the family, enjoy a mind puzzling challenge and raise funds for STARS! There’s even a ‘Pick & Mix’ sweetie teaser for the younger readers on page 23. Raise £10.00 for STARS, and in return you will receive a cuddly STARS teddy bear! Perhaps use it as a prize!

Thinking ahead is key to success. Once you have decided your event, start planning, giving yourself plenty of time. To be successful and minimise stress, the important factors to cover are: • Permission authorities

from

relevant

• Publicity • Hall bookings • Getting sponsorship

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2. Place • Decide where you want to hold your event and make sure the venue provides everything you need. • Have a contingency plan in case it rains on the day of an outside event • Ensure the venue has sufﬁcient insurance to cover your event. 3. Money • It is a good idea to consider how much your event will cost and how much your event is likely to raise. 4. Helpers • Gather a team of willing helpers – allow for last minute changes. • Be sure of everybody’s particular skills – and use them! • Draw up an agreed plan of who is doing what. • Give a copy of the plan to all the helpers. • Ensure that everyone knows what to do and feels happy and conﬁdent about it people are more willing to help if they are happy. • When all jobs have been allocated, make sure that the whole team knows all of the dates and timings communication is essential. • For fundraising in schools, have a meeting with the Head Teacher or form tutor to ensure you have their full support - you may even get their help.

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 beneﬁtted 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 finished 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 fix a date to start Level 3!

You1ST

I was even in the local newspaper recently I got an award for my NVQ Level 2 (in Social Care) and I was presented with the Manager’s award for being ‘’A confident, caring member of the care staff!’’ How great is that? I was the only one who got the Manager’s Award amongst all of the staff at the home, including managers, activities lady, senior carers, other assistants, domestic and kitchen staff. At last I feel so good, I was so happy when they read my name out. I was given a big bunch of flowers, chocolates and a voucher

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

Things do get better!

STARS members have also spent part of the summer sparkling! Francesca won a competition to model with Katie Price at the launch of equestrian clothing!

Naomi made it to the ball, not only on time but as the true ‘Belle’

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.

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What do y ou g et i f

te l o k l wh fo ere rh a a is be Be ar ’s fa vo ar ur Ko ite ka d K

r ou T a g av

y sh o Beca u u se Wh a

What animal do you look like when you get into the bath? A little bear!

w Ho

Yes, by popular demand, we have the STARS d Joke Page… How d oy ou hire boom boom! a a te

★

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

on her District Council Community Award

Would you welcome the opportunity to talk with young people who understand what ‘living with syncope’ can be like? The moderated STARS Youth Forum, offers just this.

for volunteering on to the Suffolk Befriending Scheme

It is free and simple to join – just follow the links from the STARS Education website (www.education.stars.org.uk).

Well done Sophie

Members are very friendly, supportive and quick 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? 7. Oh, a UFO?

15. What dirty boys! 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!

Cheesy Scones

e ng lle a h 1. Sieve all of y C ers cc ltes rst o the ‘powders’ Ch Ma arbu g eets 1. St mbu Str (flour/baking 2. Hu ality 3. Qu ses powder/salt) into 4. Ro rkey els a bowl. 5. Yo nstr 6. Mi laxy ar light 7. Ga rs b De ic 2. Cut up the butter into 8. Ma rkish Mag ns small squares and ‘rub 9. . Tu ck atio 10 . Bla lebr in’ to the powders - until 11 . Ce ter 8 12 . Af Kat s it resembles bread crumbs. e) 13 . Kit Tac es lat co 14 . Tic arti o 3. Grate the cheese into the 15 . Sm ix s (ch 16 . Tw tton ums ial mixture. 17 . Bu ine g per 18 . W nt im 4. Gradually stir in the milk – 19 . Mi Mix ice es 20 k & te m allowing it to bind together but i ps y lac c h i i P W d l err not get too sticky. 1. Re rawb ttle . 2 St lk bo oins ars 3. Mi ld c y be cers 5. Sprinkle the extra flour onto a rolling 4. Go mm sau ers board and roll the cheesy mixture out. 5. Gu ing opp p ms 6. Fly b st hrim roo o It will need to be about 2cm thick. . h s 7 G k us 8. Pin eth! ut m s . n e n 9 T o 6. Cut into circles and place onto a greased c ea . 10 . Co lly b gg ies baking tray. 11 . Je ied e fruit s 12 . Fr otie Jack ain 13 . To ck ots ount a Cook in a warm – hot oven (about 180’c) for 8 – 10 l 4 1 . B lly T rt F 15 . Je erbe tick minutes, or until golden brown. 16 . Sh ums 17 . Dr 18 Enjoy!

Too cold to go out? Why not bake a delicious lunch box treat!

et!

e Sh

You’ll need: 200g of self-raising ﬂour ½ teaspoon of baking powder A sprinkle of salt 50g of butter / margarine 75g of Cheddar cheese 150ml milk A little extra ﬂour for rolling A baking tray

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 jenni@stars.org.uk, or print, complete & post it back. Name: Address: Post Code: Telephone: Email:

SUBSCRIBE & DONATE

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(state amount)

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(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: _________________________

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Address: ________________________________

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________________________________________ __________________ Postcode: ____________ Please tick 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. Return to STARS, PO Box 175, Stratford Upon Avon, Warwickshire, CV37 8YD

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

/ Month / Year

2009 ( delete)

My Account Number: My Sort Code

My Signature Date

rsmith@stars-us.org Please print and ﬁll out this form and hand to your bank or building society. Thank you