STARS Issue 28, March 2008

The uts o k c Bla rust T MARCH 2008 : ISSUE 28 WORKING TOGETHER WITH INDIVIDUALS, FAMILIES AND MEDICAL PROFESSIONALS TO OFFER SUPPORT AND INFORMATION ON SYNCOPE AND REFLEX ANOXIC SEIZURES

Syncope on the Curriculum STARS Information Representatives (SIRs) are in demand!

Representing STARS at College Health Awareness Fairs, inschool fund raising events and meeting with staff in various educational establishments it could be said that syncope is appearing ‘On The Curriculum’ in many UK educational centres.

SIR training began in September 2007, led by Susan Broatch, a STARS Trustee, and Management Consultant by profession, the STARS volunteers worked through a range of topics from the causes and the possible triggers for syncopal attacks, guidance on First Aid to ‘Getting The Message’!

All volunteers attending the two sessions commented on the positive approach and confidence they now felt they had if now called upon.

Continued on page 2

Exciting News Sir Elton John and Sir Roger Moore

Thank you to all our members, volunteers and supporters who have continued to enable us to meet our aims and objectives, providing information and support to all those affected by loss of consciousness.

Read more on page 3 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

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Syncope on the Curriculum continued Alexandra Whitman made the first ‘SIR’ visit in January 2008 and commented, “I very much enjoyed the opportunity to inform the school and help them to put together strategies that would allow them to include this pupil more readily in all school activities.

worrying for us all, particularly when another seizure took place on a class trip in the woods far from any immediate help. While the subsequent diagnosis of RAS, in some ways was less lifechanging than the previous one, it was little comfort to any of us, as unlike the well-known condition of epilepsy, there was very little information available, so we were delighted when we were referred to STARS. We were sent an information pack immediately along with the offer of guidance for staff.

STARS Information Rep, Alexandra Whitman

“I found the staff to be very concerned and motivated to include the pupil, whose specific condition needed careful management. We arrived at solutions together for some of the problems they were facing and several issues were clarified and de-mystified.

“At the end, the Head said that she could not thank me enough, that the presentation and discussion had been very valuable and that she felt sure, as a school, they would now feel reassured and better informed when dealing with that pupil’s medical condition.’’

From the school’s view, Marion Scott-Baker, the Head Teacher wrote to say: “It was a shock to parents and staff when the pupil had the first syncopal attack in school. The original diagnosis of epilepsy was naturally

01789 450564

Head Teacher, Marion Scott-Baker

“The STARS Representative was very reassuring, explaining that as far as anyone is aware, RAS does not cause any long term harm to the pupil. We found this very helpful because we have not yet established what the triggers are. She was also able to explain to us how the condition might affect his learning and therefore how he would best be managed in the classroom. The insights she gave us will greatly benefit this pupil and, I am sure, many other children who present in the future. We are extremely grateful to Alexandra and everyone at STARS for their efficient and sympathetic support.”

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The Educational Pack is available as a download from the website: www.education.stars.org.uk or by ordering from STARS. It includes an Information and Resource Booklet, Sample School Policy, STARS Alert Card and Syncope poster. For further details or to arrange a visit, contact jo@stars.org.uk.

REFLEX ANOXIC SEIZURES is a type of arrhythmia (heart rhythm disorder) occurring mainly in young children but can occur at any age.

The sudden shock of pain, however slight, or indeed any unexpected stimuli, causes the heart and breathing to stop, the eyes to roll up into the head, the complexion to become deathly white, the jaw to clench and the body to stiffen often with legs and arms jerking. After 30 seconds or so the body relaxes and the heart and breathing restart. The sufferer may remain unconscious for one or two minutes or for well over an hour. RAS is often misdiagnosed as breath-holding or, more seriously, as epilepsy.

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

info@stars.org.uk

In this issue....

In STARS-US issue...

STARS needs YOUR help to improve patient services

page 4

STARS-US Board of Trustees

page 1

Shine a Light on Education

page 5

Calling all Volunteers and STARS-US Awareness Week

page 4

Naomi Fear’s Story

page 8 “Peanut”, Hannah Kurkechian’s Story

page 5

Suzanne Stewart’s StoryStory

page 6

Fundraising

page 10

Arrhythmia Awareness Week

page 13

STARS Balloon Race

page 14

Professor Rose Anne Kenny’s Story

page 17

Chelsea Johnson’s Story.

page 20

Domonic Hargreaves’s Story

page 21

Life saving equipment in the community

page 22

Sir Roger Moore receives a STAR

Sir Elton John joins us as a new STARS Patron

Sir Roger Moore, as part of his 80th birthday celebrations, unveiled his very own ‘star’ on the Hollywood Walk of Fame last October.

“In July 1999 I became quite unwell and thought I might have sunstroke from playing too much tennis in the South of France.

News also broke that Sir Roger is planning to write his autobiography for a Christmas 2008 release.

It will, of course, include the story of his collapse on stage in New York and his subsequent involvement with STARS.

Luckily I received a correct diagnosis very quickly – I had an irregular heartbeat and needed to have a pacemaker fitted. Since the surgery I have enjoyed good health and my condition has not impinged upon my lifestyle at all – I still play tennis regularly and perform around 150 concerts a year!

During 2007, Sir Roger has been a true Patron to STARS. He launched the highly successful Blackouts Checklist which resulted in almost 20,000 requests for copies plus downloads from the website, and he made the BBC Radio 4 Appeal on Mothering Sunday, which many of you tuned into and donated kindly.

“I am pleased to be a patron of STARS and to encourage the vital work the charity does in promoting awareness, research and management of syncopes and reflex anoxic seizures.”

Welcome Sir Elton John

Thank you, Sir Roger......

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info@stars.org.uk

STARS needs YOUR help to improve patient services

Trudie Lobban CEO thanking Tony Blair, former Prime Minister, for his continued support.

We need YOUR help to improve syncope services….

PLEASE COMPLETE THIS NOW AND RETURN ASAP

As part of our work to improve the experiences of patients who suffer loss of consciousness we are currently conducting a survey to determine the typical pathway to diagnosis for these patients. By identifying current practices we hope to pinpoint any areas that require improvement and where necessary we will then aim to improve services for patients being diagnosed in the future. If you or someone you know has been diagnosed with syncope, RAS, VVS, NCS, we would very much appreciate you taking a few minutes of your time to complete the online questionnaire, which asks about experiences leading up to a diagnosis of these conditions.

We would like to gather as much information as possible to help us gain an accurate picture and would very much value your assistance.

The questionnaire is enclosed for you to complete and return or it can be found at www.stars.org.uk where you can complete and email to trudie@stars.org.uk

FLYERS available for your local GP surgery / library etc…

Please contact us if you can help to raise greater awareness of blackouts / loss of consciousness.

Could you place a few flyers in the doctors’ waiting room? Library? If the answer is YES please email trudie@stars.org.uk or ‘phone 01789 450564 and we will send a supply pack.

Rapid Access T-LoC Clinics (RATC) - formerly known as Rapid Access Blackout Clinics It is interesting moderating the STARS message board and seeing many of you coming to your own conclusions about these facilities.

Yes, Rapid Access T-LoC Clinics are needed in hospitals to reduce misdiagnosis, and to ensure rapid diagnosis and treatment options, eventful journeys and unnecessary visits to the various clinics and doctors are eliminated.

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Here is one posting from the Board, which I think speaks volumes and echos STARS’ mission for 2008.

“Roll on the day when Blackout Clinics are accessible to everyone and we are all offered the same standard of care” Jane If any of you know of a Syncope Clinic in your area, please let us know. We are compiling a list of these which we will then post on the STARS website for our members.

SYNCOPE CLINICS With your help we have now identified over 180 syncope clinics in the UK. STARS information has been distributed and excellent responses received. It only takes a call to your local hospital to ask if a syncope clinic exists and then let us know the name and address of the hospital (and if possible, name of consultant or nurse leading the clinic). We do the rest!

Syncope Youth Notice Board With daily postings, worldwide membership and a huge range of topics on the board, the moderated STARS Youth Notice Board welcomes all new members!

From jokes to questions, joys to tears, the moderated board offers friendship, support and the reassurance that you are NOT alone in managing life with syncope.

So sign up now, membership is free, and open to all young people aged between six years and twenty years of age.

All messages are moderated, and members are automatically notified

by e-mail when replies and new topics are posted.

To sign up click on: http://groups.yahoo.com/group/ SyncopeYouth

5. You will need to re-type in your password to verify your membership.

6. Hey presto! You are a fully fledged, signed up member of the Syncope Youth Notice Board!

Then follow the simple instructions:

“This Board is great as you feel like you have friends you can talk to who understand and so I don’t feel so alone about what happens to me. Before, I never talked to anyone except my mum”

1. Click on sign up/join.

2. Complete the information page, and decide on a password.

3. Click ‘submit’.

4. Very soon you will receive an e-mail asking you to click on the Yahoo link to verify your membership.

Hannah

Support in the Staff Room ‘STARS is now pleased to be able to offer a free short training programme to all educational establishments. The session focuses on the managment and care of a student who has been diagnosed with syncope. The STARS Information Representatives appointed and trained can also be booked for

assemblies, syncope awareness events or group meetings. Free visits are available for ANY university/ educational/ child care setting where a student or pupil diagnosed with syncope is registered. A Resource and Information Booklet – which includes a sample care plan, poster and Sample School Policy are also

available, either downloaded from the website or ordered, free of charge, from STARS. To find out more or book a visit, please contact jo@stars.org.uk or visit the STARS Education website: www.education.stars.org.uk

Interested In Becoming A STARS Rep? If you would be interested in becoming a STARS Information Representative (SIR), and would like to attend training later in 2008, then contact jo@stars.org.uk to register or to find out more details. Being a SIR can involve as little or as much time as you are personally able to offer. Once trained, volunteers may be asked if they are available to help organise fundraising events, contact local services, visit a local school, distribute leaflets and booklets amongst local surgeries or support an awareness raising event.

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Order your posters now from jenni@stars.org.uk or call 01789 450 564

Were your blacko uts ever mistaken for epileptic seizures, or did years pass before an accura te diagnosis was made?

Did your irregular he

art rhythm go un diagnosed for a lon of time before yo g period u were referred to the correct spe cialist?

Would you be pre pared to share yo ur experiences wi and potentially th the media help hundreds of other people who from blackouts du are suffering e to irregular heart rhythms, but don’t where to turn? know Please turn over to see how sharin g your experience thousands of lives. can change

www.stars.org.uk

The problem About a third of people di agnosed with but an irreg ular epilepsy in th e UK do no prescribed un heart rhythm. This trans t in fact have lates as 150, necessary m epilepsy, 000 people edication, w who have po hilst their tru Blackouts ca tentially been e condition n also be a has been lef first symptom 100,000 de t untreated. of a fatal irr aths every ye egular hear ar in the UK diagnosis an t rhythm, w . Many of th d treatment. hich causes ese lives coul over d be saved with approp riate

The Solutio n

Syncope Trus t And Refle x anoxic Seizu awareness ab res (STARS) out heart-rel is a charity ated blacko diagnosis. that is worki uts, and to ng to raise promote th eir prompt Many of ou and accurate r members and friends diagnosis of who have ex blackouts, ha perienced a ve shared th helped us to misdiagnosis eir stories w get in touch or lack of ith the med with thousa ia. In doing nds of othe There are a this they ha r sufferers ar lot more pe ve ound the UK ople out ther appreciate yo . e who need urs. our help. An d w e w If you are in ould really terested in helping us, experience please get in can be dow to nl uc oa h. completed, ded from th A form to he you can send e STARS web lp you outli site, www.s ne your th discuss our tars.org.uk. awareness ac is to us either by emai l or by post Once tivities. , an d we will be in Thank you for your tim touch to e. We hope to hear from you soon

For more in formation p lease conta Email: trud ct STARS ie@stars.or g.uk

Tel: 01789 450564 Address: PO Box 175, St ratford Upo n Avon, W arwickshire , CV37 8YD

www.education@stars.org.uk 6

Mummy, why do you keep falling over?

One of our members, who suffers with vasovagal syncope, asked for our help recently. “My young daughter does not understand when I faint and is frightened, please help!” “That’s easy, we need a fairy story,” replied Jo, our creative Education Officer. And here it is…

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NAOMI’S STORY – Chapter 2 it, even though I still didn’t feel well. So we arranged to meet Ali my arrhythmia nurse at 10am the next day so they could make sure I was OK and see what my ILR had captured.

My mum was very nervous but I was OK. Dad sat in the waiting room while mum and I went in and told Ali what had happened. The technician then put a wand thing on me and said, “We’ve got it”. She said that I had had an attack at 8:45 and my heart stopped for 33 seconds. I had 3 escape beats and then it stopped again for another 12 seconds. My mum started to cry: she was sad for me and upset that she had passed RAS on to me.

Hi, my name is Naomi and I am 15 years old. In the last newsletter I wrote about my experience of living with RAS and about having an ILR (insertable loop recorder) implanted to record my heart rhythm.

I had the ILR in May and on 8 July 2007 I had an attack. It was a Sunday morning and I got up because I was going to work. I let our dog Jake out in the garden, made a drink and let Jake back in the house. I started to feel funny, so I came into the living room to sit down and put my head between my knees. But that made me feel worse, so I lay down on the sofa and can’t remember what happened after that. When I woke up, my mum, dad and my sister were there. I lay on the floor for ages then went to bed because I felt very ill and tired.

On the Monday mum phoned the hospital because I needed to have the information downloaded from my ILR. We all hoped it had recorded something. They wanted us to go in that day but I had work experience and didn’t want to miss

Ali then phoned my consultant, who is an electrophysiologist (a heart rhythm expert). He was moving house so was not at the hospital but he made a special trip to see me. He was very quick and was there within an hour. He told me I needed a pacemaker and needed it quickly – so it was arranged for Thursday 12 July. I was pleased because it would mean no more attacks. My mum hasn’t had any since she got her pacemaker: she is so much happier now, because she does so much more instead of sitting in all the time. She has had blackouts all her life and it made her so unhappy. I was first on the list on Thursday and my consultant said it was best for me to have an anaesthetic as it takes longer to put in than an ILR. I was only in hospital for one night; poor mum stayed with me and had to sleep in a chair.

Everything was explained to me – why I needed a pacemaker, what sort, where my scar would be and what I could do afterwards. I didn’t have any questions because they told me all I needed to know, so

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I was quite happy by the time I went to theatre. I was back in my room before I knew it and was absolutely starving.

I came home the next day. A week later, I went back to my part-time job and so far so good – I haven’t had any problems.

I now share my experience of suffering with RAS, having an ILR fitted and, finally, being given a pacemaker with everyone on the STARS youth message board. I have a few members whom I chat to but it would be nice if one or two other young people joined in.

Naomi Fear Dorset

Note: If anyone wishes to talk to Naomi about her experiences, then you can find her on the youth message board, which is getting busier and busier. And, mums, there is no need to worry who is talking on the board as it is moderated.

Naomi’s family at this year’s STARS Conference

STARS would like to say thank you Andrew, Julie and Naomi for your continued support, it is very much appreciated.

STARS Conference 2007 It was great to be able to put faces to the names that have, over the past months become like family. Unfortunately Rocco and I didn’t manage to get to the conference until late morning.

Laura whisked me away to do my podcast, then it was lunchtime!

I missed the debate about who should be running blackout services but, having been inspired

by Julie and her brave family, I intend putting my case to the conference next time around!!!

I am passionately in favour of having a specialist centre with all the relevant departments, personnel and patient history records under one roof – a Rapid Access Blackout Clinic, of course!!

Having done the rounds of four Newcastle hospitals for more than eleven years with still no diagnosis, I feel more than well qualified!

I am also spurred on by the fact that while Julie, her father and her daughter were speaking about their own journey to a diagnosis, you could have heard a pin drop in the hall!!

We do have a voice and we can and will make a difference.

Joan Laamaim Newcastle upon Tyne

Those of you who ‘chat’ on the STARS message board may recognise the names of the ‘Syncope Sisters’ who were among the founding members of the Board.

From left to right: Jane Mackay, Carole Quinney, Joan Laamaim, Julie Fear.

David and I travelled down to this year’s STARS day at the Conference. We had arranged to meet up with Joan, Carole and Julie from the Message Board and, of course, all the STARS team.

When we were asked if we could do our ‘bit’ for the film crew, we were more than pleased to tell Jennifer’s story, enabling us to let others know that syncope is not the end of enjoying life, and that with a little ingenuity and preparation, then school and any clubs or activities can continue more or less as usual.

We all found each other after we had done our filming stint and had a walk around all the displays, checking out what is available in the medical world to help syncope. After that we were off to lunch and a good old chat. It was just like meeting up with old friends, and like old friends we just took up where we had stopped chatting on the board!

Unfortunately we had to leave fairly early as we had a long drive back to Scotland, but we will be back next year if we possibly can.

Jane Mackay Glasgow

STARS Conference 2008 2008 STARS conference for 2008 will be held on Monday 20th October at the Hilton Birmingham Metropole Hotel. Please put the date in your diaries and come and meet other families in the same position as you. A full agenda and more information will be found in the Summer 2008 Newsletter. Details for making an early booking will be found on the STARS Website etc www.stars.org.uk by end of March or visit www.heartrhythm.org.uk. Contact Nyree Sherratt on congress@stars.org.uk or call 01789 451831/2.

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Fundraising STARS NEEDS YOU! – Volunteering for STARS

STARS is the only charity in the world dedicated to supporting and caring for those coping with syncope and reflex anoxic seizures.

STARS would like to take this opportunity to thank all those who have funded our work since the last edition of the Newsletter back in July 2007.

Without your continued support STARS will not be able to maintain the high level of services on offer so keep up the great work and don’t forget the fundraising office is always there to help alongside the new fundraising web area. http:// www.stars.org.uk/fundraising/ STARS would like to thank you all.

STARS desperately needs volunteers to help us in a number of key areas of operation.

Phoebe Palmer – Fundraising superstar

The options are

Phoebe has been working tirelessly fundraising for STARS and in particular for POTS sufferers.

STARS was nominated to be the charity of the year for the John Lewis Benefit Year 2007. As part of this STARS has received monies from two events of note, The Team England Golf Day which was on the 14th May 07 and the Captain’s Dinner held on the 23rd November 2007.

1. Fundraising; Always an essential option to allow STARS to continue operating. www.stars.org.uk/fundraising/ 2. Educating through Awareness; Also a critical area, raising awareness of the condition and sharing common issues and barriers will lead to national improvements in care and support. www.stars.org.uk/fundraising/ volunteers/ 3. Project specific support; This is where you can, as a supporter of STARS work, sign up to help a specific project that maybe close to your heart. At the moment we are looking for project volunteers for our ‘Shine a Light on Education’ project as we attempt to support children with syncope as they make their way through school life. www.education.stars. org.uk/ It is easy to become a Volunteer you just need passion and time and you could make a huge difference.

Four brave STARS members completed the challenging British 10k London run on Sunday 1st July 2007. We would like to thank, Samantha Coney, Nicola Meldrum, Tara Meredith and Andrea Meyer.

All four raised substantial funds for STARS.

Chelsea Johnson – Tesco Junior & Mini Great North Run On the 29th September 2007 Chelsea stepped up and with great courage and determination conquered the Tesco Junior & Mini Great North Run. She is an inspiration to us all.

Danielle Burns a mother of an RAS sufferer ran in the Asics Breakfast 5K Run 1st July 2007 in aid of STARS. “The reason for my sponsorship being donated to STARS is because my youngest son suffered from a very mild form of Reflex Anoxic Seizures, and STARS offered us great support and help when I needed it most.”

Thank you from everybody at STARS for great work.

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THANK YOU STARS FOR YOUR SUPPORT

“On 3rd August 2007 I had the best day of my life, when I married my husband Eric. The wedding was even more special to us after a year in which my sister’s twin boys arrived very prematurely, Eric’s parents both suffered strokes within a few months of one another, and I had a particularly difficult time with pre-syncope symptoms/posturaly potension. Fortunately I am now

an obsessed auntie of two healthy one year olds, we were proud to have Eric’s dad as one of the Witnesses to our marriage, and his mum recovered well enough to make our wedding cake tower of muffins!

As for my health problems – well I tried not to let them get in the way of the wedding or celebrations! The frequent dizzy spells have been a part of my life for 13 years, so my wedding day was no exception.

Fortunately I was having a good phase in the weeks surrounding the wedding so the symptoms weren’t severe but I was naturally pretty worried about swooning at the altar, so to speak! (Didn’t want to end up on You’ve Been Framed).

I was determined not to let my dizziness spoil my dream day so I went ahead and wore a big corseted dress, and balanced the risk by allocating one of the best

men the task of carrying round a pocket fan for me to keep cool (and conscious!). Having said that, wedding days aside, it is difficult and frightening to feel so faint so frequently, and I still don’t have all the answers of treatments. STARS was a huge help to me at the start of the year when I was really struggling to get another referral to a consultant and it has been a great resource for gaining more information and finding other people who have syncope problems. So STARS was one of the charities we donated to in lieu of traditional wedding favours – instead we were happy to put STARS key rings and pens on the tables for our guests to raise awareness of the charity.”

Thank you Anita Kiernan for your support!

Charlotte and Francesca Lobbans’ Parachute Jump

On the 2nd January 2008 still recovering from New Year’s Eve celebrations, we jumped out of a plane at 14,000 feet above Sydney, Australia as we thought it would be a good opportunity to raise some much-need money for STARS. Needless to say we were a tiny bit nervous, especially when Francesca found herself sitting by the exit! Yes we did have our eyes open for the entire 60 second free fall and breathed a sigh of relief when the parachutes opened!

We would really like to thank everyone who sponsored us.

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Introducing the new STARS Fundraising Area

Fundraising for STARS is now easier than ever. Since 18th February 2008 STARS is proud to announce its brand new fundraising area. Please take a look and start your fundraising journey by following the link www.STARS.org.uk/fundraising If you don’t have internet access please don’t despair, you can always give the fundraising team a call on 01789 451830

FUNDRAISING WHILE YOU’RE SHOPPING! easyfundraising.org.uk provides a FREE fundraising service, where you can raise funds for STARS or any charity, trust, school, club, good cause or community group.

This is a FREE online fundraising solution.

Each purchase you make generates commission – the money is then given by cheque to STARS.

The giving machine, supports STARS and it costs you nothing!

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JOIN US TO HIGHLIGHT SYNCOPE! ARRHYTHMIA AWARENESS WEEK 9th – 15th June 2008 (World Heart Rhythm Day – 13th June) Why should I get involved?

“HOW CAN I BECOME INVOLVED?”

x x x

Heart rhythm disorders affect up to one million people in the UK, 120,000 experience unexplained loss of consciousness each year!

x

Hold an awareness event/display ‘Adopt a GP surgery’ Write to your local MP Conduct an awareness survey

For further information and to order your materials visit www.aaaw.org.uk Or call 01789 451823

We need your help to continue raising awareness of arrhythmias, their causes and effects, so that everyone receives an accurate diagnosis, effective treatment and improved quality of life….

Join the STARS Great Balloon Race!

Email jo@stars.org.uk or call 01789 450564

Please tick the relevant options below to register your support &www.stars.org.uk participation in AAAW 08:

‘‘Get with the beat…know your heart rhythm…’

Atrial Fibrillation…Tachycardia…Bradycardia…SVT… Syncope…Sudden Cardiac Arrest…

If you prefer, you can tick the relevant options below to register your support & participation in Awareness Week 2008. Send the form to STARS, PO BOX 175, Stratford Upon Avon, Warwickshire CV37 8YD STARS Great Balloon Race!

Join us for the balloon launch at a place near you and meet other STARS members (details upon request) Buy/sell a balloon and enter the competition (see application form)

AAAW 2008 (9th – 15th June)

Name (Mr/Mrs/Miss/Other)_________________________________________________

Address______________________________________________________________ ______________________________________________________________________ _______________________________________________Postcode______________ Phone________________________________________________________________

Email_________________________________________________________________

'Adopt a Surgery' Deliver STARS information to your local GP surgery, ambulance service or hospital

Conduct an awareness survey In 2004 we conducted a public awareness survey of heart rhythm disorders - give up two hours of your time and ask the public some questions!!

Hold an awareness event Man a stand in your local surgery, hospital or in a public place - we will provide the materials!

Fundraise for STARS Whether you hold a coffee morning or jump out of a plane, help us to raise the funds that we need to continue to support those with syncope

Write to your local MP 'Access to arrhythmia services - has anything improved?' MPs listen to the voter!

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Great Balloon Race STARS is holding a balloon race to raise awareness of syncope.

Balloons will be launched during Awareness Week 9th - 15th June 2008.

The balloon ticket returned to STARS from the furthest destination will be deemed the winning ticket.

Winners will be notified by 1st August 2008. £1.00 per balloon, all money raised will be donated to STARS Top Prizes include an overnight stay in a luxury hotel to the purchaser of the winning balloon; £50.00 cash to the person who sells the most balloons and £50.00 cash to the person returning the winning balloon ticket!

Find out more on www.education.stars.org.uk or www.stars.org.uk

AFFILIATED TO

STARS PO Box 175 Stratford-upon-Avon Warwickshire CV37 8YD www.stars.org.uk Tel: 01789 450 564

The Heart Rhythm Charity www.heartrhythmcharity.org.uk Arrhythmia Alliance Help Line: 01789 450787 or email: help@heartrhythmcharity.org.uk

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Great Balloon Race Ticket Form All money raised will be donated directly to STARS

Only £1.00 per ticket

Registered Charity No. 1084898

BALLOONS WILL BE LAUNCHED FROM SITES AROUND THE UK DURING THE ARRHYTHMIA ALLIANCE AWARENESS WEEK, 9TH-15TH JUNE 2008.

Each balloon will be attached with a numbered ticket indicating the purchaser and launch site (no names/personal information will be printed on the ticket). The balloon ticket returned to STARS from the furthest destination by 11th July 2008 will be declared the winning ticket.

Winners will be notified by 1st August 2008.

1st Prize, overnight accommodation in luxury hotel (UK wide chain) £50.00 cash to top seller! £50.00 cash to ticket finder!

Name

Contact Details Please include email & telephone no

Amount Paid

Ticket to receive Gift Aid Box information from STARS

Ticket Seller’s name: __________________________________________________________

STARS, +44 1789 450564

Return cheques and ticket forms to: PO Box175, Stratford-upon-Avon Warwickshire CV37 8YD trudie@stars.org.uk www.stars.org.uk

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

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

You can type on this form and email it back to charles@stars.org.uk, or print, complete & post it back.

Name: Address: Post Code: Telephone: Email:

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 fill in and email back to us for identification 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.

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16

Professor Rose Anne Kenny Professor of Cardiovascular Research at Trinity College, Dublin Trustee and Patron of STARS

Age is honourable “As an expert in geriatric medicine, Rose Anne Kenny has wide-ranging experiences, but care for the elderly is her passion” Claire Egan.

“UNFORTUNATELY, there is a very ageist attitude in Ireland and the challenge is to change people’s attitudes so that ageing is something we can look forward to,” declares Professor Rose Anne Kenny.

The Mayo woman is two years into a demanding post as Head of the Academic Department of Medical Gerontology at Trinity College, Dublin and Director of the new Centre for Successful Ageing at St James’s Hospital. Furthermore, she heads up the new Falls and Black-Out Unit at the Dublin hospital. She is thriving in a position which sees her conducting clinical sessions at St James’s, lecturing at Trinity and overseeing major research projects. Throw in fortnightly

lecturing appointments in myriad European cities, not to mention the demands of family life, and the word ‘busy’ becomes a slight understatement.

Geriatric medicine is her field and providing a better standard of care and quality of life for people as they enter their twilight years is her mission.

Her father, Dr Billy Kenny, a native of Claremorris and a member of the 1950 All-Ireland winning Mayo team, passed on the medical genes to two of his four daughters. He also imbued Rose Anne, the eldest, with an enduring passion for Mayo and its football teams.

www.stars.org.uk 17

‘‘We try to get to as many matches as possible, and haven’t missed an All-Ireland,” she says.

Billy Kenny graduated from University College Galway with a degree in medicine and two hard-won Sigerson Cup medals, captaining the side. He left Ireland, married and settled in Canada where he worked as a doctor for a number of years. Unfortunately, he passed away at a young age having contracted a very aggressive form of Multiple Sclerosis.

“I would have been seven when he got sick. He had a remarkable physical illness yet he had a fantastic mental outlook. He was always cracking jokes, very positive and very funny. I suppose that as

he was sick for so long, I matured very quickly. I never thought about doing anything else but medicine, and I suppose in a way I felt a responsibility to do it,” she explains softly.

Having graduated from UCG she settled in London and completed postgraduate medical study at Hammersmith Hospital and Westminster Hospital.

“It was while I was in London that I conducted research into cardiology and heart disease. As a result of this I was mainly working with older patients and I became extremely interested in this area. I realised that heart disease and ageing was not something that many people in the research fraternity had focused on. I came up with the hypothesis that low blood pressure conditions were important in maintaining brain function and I got extremely interested in this from a research perspective.”

Described as a ‘world leader in research into cardiovascular and mobility disorders in ageing’, a description she modestly bats away, her work at Newcastle saw her establish a world class ‘Falls and Syncope’ unit which was replicated in hospitals across the UK. She envisages a unit of similar stature emerging, over time, at St James’s.

Sixteen fruitful years were spent in the north east of England, an area where unemployment during the 1990s was at over 40 per cent.

“I got fantastic exposure to delivering good quality medicine to the most needy. We worked exclusively for the NHS, as there was no such thing as private practice. There were budget constraints everywhere and it required coming up with innovative ways to deliver good quality care. The Falls and Syncope centre at Newcastle had patients

coming in, getting tested and diagnosed on the day and leaving that evening. The service was very much rapid access and as a result of the NHS monitoring our unit, they found significantly fewer patients were admitted to hospital,” she explains.

The subsequent move back to Ireland in 2005 brought a new professional challenge.

“The position at Trinity had a huge research component to it; there is an excellent brain ageing research unit at Trinity while St James’s is a fantastic teaching hospital,” she explains.

Her workload combines lecturing and directing postgraduate students at the university along with her dual directorships of the Falls and Black-Out Unit and the Centre for Successful Ageing.

She conducts four clinics a week, dealing with patients who suffer from black-outs or falls.

“At the unit we carry out laboratory tests, tease out the causes and define the best treatment. Older people present differently and part of our research is to identify what is so different about their circulation or their brain which makes their particular black-out contrast to that of a younger individual. Helping to improve the diagnoses and treatment by GPs and nurses is also another aim of the unit. There is a perception that black-outs are associated with old age, but that is completely untrue. Seventy percent of black-out cases can be cured if diagnosed properly.”

And so what of the new Centre for Successful Ageing – one which aims to tackle ageism in society and help people embrace the ageing process, as a new chapter in their lives?

“There was not a lot of work done in relation to ageing in Ireland and it is very much an emerging issue.

www.stars.org.uk 18

There is so much to work on and improve, not just from a medical perspective but also in the whole area of social services.”

Ireland’s ageing population, hampered by poor financial circumstances, has been left floundering in the slipstream of seismic economic changes wrought by the Celtic Tiger.

“Over 45 per cent of people over the age of 65 are on the poverty line. There are two things that scare people about growing older – poverty and loneliness. If you ask someone where they want to die, 90 per cent say in their own home, yet only ten per cent realise that wish. Most of the older people we know are living independently in their communities and it is possible to put supports into those communities so that people can stay there.”

The aims of the Centre for Successful Ageing, Rose Anne agrees, are ‘idealistic’ but achievable.

“The four pillars of the centre are research, education, clinical services and creative life in ageing.

We want it to be a national centre which will set a level and a standard of care for older people which will be adhered to at all levels, whether that is residential care to homes in the countryside or acute hospital care. The quality of care at present is not as good as it should be. If we implement the objectives of the centre, we will prevent disease and, from a health economic perspective, it is a far better alternative.”

Major research programmes are already under way. TILDA, a longitudinal study of over 10,000 people nationwide, will gather a wealth of social, economic and health information which, Rose Anne explains, will provide a detailed ‘health assessment’ allowing medical professionals

constitutes

from a terminal illness who may wish to end their suffering?

Another project involves technology giants, Intel, who have invested €3 million over a three-year period, with the aid of Irish university researchers and hospitals, to devise new technologies which support ‘independent ageing’ in the home.

“It is a thorny subject and I don’t particularly agree with it,” she offers initially. “However, I do think that the extreme of aggressive intervention for people when they are in the last stages of a disease is not appropriate either. I think that in so far as possible we should encourage people to declare what their expectations are of how they want to exit and help to facilitate them in so far as is possible within the law. Call it a living will, declaring in advance how you want to die and how aggressive you want the intervention to be. For instance, if one were in a coronary care unit, you could state how many times you wanted to be resuscitated.

As medical professionals, we can apply this within the rules of the law and with sensitive discretion,” she concludes.

to ascertain what ‘successful ageing’.

“Once you turn 50 your muscle power decreases, leading to change in your walking style. For instance, sensors in the carpet will pick up such changes, and in turn information can be used by the patient or GP to identify the reasons for this, leading to early intervention and preventing a possibility of falls in the home.

Work is also being done on technologies which will counteract social isolation and improve interaction.”

Having spent the vast majority of her professional career working with elderly patients, attention turns to the question of euthanasia.

What of an individual in their twilight years or those suffering

As we sit in the holiday home of Rose Anne and husband Gerry, in the village of Kinnadoohy, west of Louisburgh, I tentatively enquire whether she ever worries about growing old herself.

“I don’t fear ageing, but what I would fear is poverty and social isolation as you get older. You find once you reach a certain age that you do think about the ageing process. I already need glasses and I found that my two sons, on a hike on the recent Bank Holiday Monday, would have climbed Croagh Patrick twice by the time I reached the top,” she jokingly responds.

On the subject of Ireland though, and the prospects for elderly people in this country, a more sombre tone returns.

“We want Ireland to be the best country to grow old in, and one that you can actually look forward to growing old in – that will require big changes in people’s attitudes and in the delivery of care and in our economic status before we realise this ambition,” she concludes.

This article has been reproduced with the permission of the Editor, The Mayo News, Westport, Co Mayo, Ireland – Thank you

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A Champion of Excellence through Diversity

When I was little I got diagnosed with epilepsy and lots of things would trigger a fit like being sick.

I had lots of medicines to try and control the fits but nothing worked.

I started with attacks when I was a toddler and it wasn’t until I was twelve and became very ill that finally mum got angry with the hospital and got me referred to a specialist.

We visited a consultant in Sheffield.

The consultant told us it was Reflex Anoxic Seizures. As well as the attacks, I suffered a lot of joint pains in my ankles, knees and wrists.

Some days it would hurt so much that I could barely walk or hold a pen. I had always enjoyed school and sports, but over the years I did have a lot of time off due to the attacks leaving me feeling very tired. Some days I would only do half a day at school. When I have an attack I do not feel it or remember anything about it, but it does upset me and makes me frightened.

My consultant is very nice and he was the one who gave mum the information on STARS Charity.

My family is very protective of me and still gets nervous when I start to become ill with even a cold; but they are also very supportive and help me to strive in anything I want to do.

When I was well, and people understood that it was reflex attacks I was having, I started to help my granddad Johnson, who is the president of the local running club. He would ask me to help

out on race days selling raffle tickets or selling refreshments in the kiosk. When I felt well I would go on to the track or field and help out with the younger athletes. It wasn’t until I was 12 that I would train with my granddad and the young athletes. Sometimes I would race for the club too or do a small local fun run. I never came first but enjoyed just being there running, being part of something and even enjoyed being in the mud too!

Late in 2006 and early last year I became very ill again, the attacks came back stronger than they had done for a number of years. I had two months off school but still managed to sit my GCSEs in Maths, Chemistry, Physics, Biology and Product Design and gain 2 A* and 3 As. My family was very nervous for me because they were worried that I would not manage; but I did! My granny Smith helped me to revise and she learned a lot too!

I was put forward to be a ‘Champion of Excellence through Diversity’, which is an award that is given to someone who has succeeded despite having many obstacles put in their way. I was awarded the prize and attended a function with the Mayor of Rotherham and his wife. My mum cried, and my dad was very proud.

The evening was lovely and there were many other children who had worked hard to overcome their difficulties too.

Since then I have picked myself up again, continuing with my exams and doing some running at Rotherham Harriers Athletics Club, who have been a great support.

For the past couple of years I have tried to enter the Junior Great North run, held at Gateshead, Newcastle.

I was so pleased to have an entry number in May and decided to get

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people to sponsor me to help raise money, so in turn I could help more children like me. I’m really glad I was able to do it as I have raised a lot of money for charity. I ran it in 23 mins 48 seconds. Just before the race I received an email from Doug Henderson the fundraising manager of STARS. I was really pleased to receive his email and he even sent me an official STARS Fundraiser t-shirt; It made lots of people ask about STARS too. I have also just finished doing a raffle to raise more money and at the moment I have collected over £100 from this too. It is surprising what a little effort can do.

Soon I will be going to the Yorkshire Heart Hospital in Leeds to have a loop recorder fixed to my heart to trace what is happening when I have attacks. To keep me fit and strong I will continue to keep busy down at the athletics club.

My goal was to run in the Junior Great North Run since I was about 8 years old and I would have never believed that I would have been there like I was last week. It is still hard to believe that I was actually there running over the millennium bridge, with everyone clapping and shouting the runners on. If you keep focused and positive I have found that you can accomplish anything no matter how far away or how difficult it may be some days. My new goal is to complete the Great North Run in two years time with my dad and after this the London Marathon; raising more money for the people who have supported me and my family.

Having something to aim at keeps your mind and body strong.

Chelsea Johnson Aged 16 years Rotherham

Sharing Dominic’s Story sat Cameron, my eldest son, down and explained what I could to him, as he wanted to know if his little brother was going to die! He had witnessed the first episode and it had upset him, so I am always conscious of his feelings too.

I wanted to share Dominic’s story because I have recently joined STARS as Dominic was diagnosed with RAS. When I logged on to read the case stories, I cried tears of joy – for a change. Finally I didn’t feel alone with what my family has been through.

Dominic who is now a lively three year old was 8 months when he started having what we thought were ‘funny turns’. He would cry and seem to not breathe for 5 or so seconds, and his lips would turn blue. In those early days he always started crying again soon so I wasn’t too concerned.

But not long after his first birthday he bumped his arm while playing and started crying. This time, after about 10 seconds of vigorously thrashing his arms around and making a clicking sound from his throat, he went a grey colour. His lips were blue, his arms and legs went rigid and his hands and feet turned inwards. Then he went limp in my arms. His eyes stayed open but rolled to the back of his head. I was petrified and kept calling his name until he regained consciousness a few seconds later.

He was very upset after this and both of us were sobbing.

We took him to A&E and he was kept in overnight. The consultant said he was suffering with ‘breathholding’ would always regain consciousness and would grow out of it by school age.

We were then sent for an ECG. What a nightmare this was! For every sticky pad they put onto him, either he moved so that one fell off or he pulled them off. Eventually we managed to get a short reading and that said his heart was fine. I

The next few months were filled with near misses – the times when he doesn’t actually lose consciousness. Then last November he had three bad seizures in three days. The last one was when my mum was looking after him while I was working. She was very concerned and took him straight to the doctor, who basically told her to carry on with whatever she was doing and to make sure he was safe but not to comfort him.

I was so annoyed with this that I immediately took Dominic to another doctor, who was very sympathetic of the effect it was having on my family and referred us straight to the children’s hospital.

Within weeks we had seen another consultant, who admitted she didn’t know what was wrong but sent him for an EEG. This was another fun day with an 18-month-old having electrodes stuck to his head, but somehow they managed to get a reading and epilepsy was ruled out. We were referred back to our original consultant but in his absence we saw a colleague who confirmed RAS, told me about STARS, suggested an iron supplement but wanted another ECG – I can’t wait!

Since his diagnosis, he is having one seizure every week or two and a few near misses each week. Every seizure seems to be getting worse: he is unconscious for longer and is quite often sick when he comes around.

He seems quite sensitive and clingy after each seizure so I sit and cuddle him, which seems to help both of us.

Dominic has always loved his sleep and used to have a two-hour nap during the day. One thing I have noticed is that these sleeps are getting shorter as he gets older, and because his tolerance is less

www.stars.org.uk 21

when he is tired I think this is one of the triggers for his seizures.

However, unlike some sufferers he doesn’t fall asleep after them.

Life at the moment in our household is hectic enough having a toddler going through tantrums, but Dominic has also started head banging the floor out of sheer frustration or from being told ‘No’. This raises the stress levels as clearly I don’t want this to bring on a RAS attack, but neither do I want to give in to tantrums.

I do not want Dominic to be treated differently because of RAS, so I am guilty of avoiding certain situations.

I can be a bit protective of him, but I am a worrier and this had added to my fears. When Dominic starts nursery I will be so worried that he may have a fit and not be with someone he knows well. But I will check out the nurseries first and go with the one I feel most comfortable with – and of course the STARS leaflets will help the staff. My consultant requested that I video a seizure, which I did and I have shared this with Trudie in order that someone else may benefit from it.

Recently, whilst talking to Trudie, I discovered that RAS can run in families. My eldest son does not have full blown RAS attacks but he does suffer with bad night terrors, which is a classic RAS symptom. My mother also reminded me that when I was about 5 years old I had the odd ‘funny turn’ but no-one could put a name to it.

Thankfully, I have never had any episodes since.

I don’t know what the next few years hold for the Hargreaves family, but once you have been through the trauma of having a child with RAS I guess we will be able to face anything. Dominic continues to be a clever, active little boy and I don’t want to wish the time away until he is 5. Maybe things will change – after all, they grow up so quickly.

I now feel a little less lonely and am already grateful to Trudie and all at STARS for their continued support.

Nicola Hargreaves West Yorkshire

LIFE SAVING EQUIPMENT IN THE COMMUNITY INTERESTED in finding out more?

Contact Laura Nelson Email: education@stars.org.uk Telephone: +44 (0) 1789 451823

WEST HARPTREE POST OFFICE/VILLAGE STORE

CHEW MAGNA SETTER & LEE ESTATE AGENTS

CHEW STOKE VILLAGE STORES/GARAGE

STANTON DREW PARISH HALL

CHEW VALLEY DEFIBRILLATOR PROJECT Awareness session held in Chew Stoke - October 2007

BISHOP SUTTON POST OFFICE/SPAR SHOP

EAST HARPTREE VILLAGE HALL

www.stars.org.uk 22

MARCH 2008 : ISSUE 1 WORKING TOGETHER WITH INDIVIDUALS, FAMILIES AND MEDICAL PROFESSIONALS TO OFFER SUPPORT AND INFORMATION ON SYNCOPE AND REFLEX ANOXIC SEIZURES I am very honored to be serving as Executive Director for STARS-US. Being on the ground level of a new venture is very exciting. I have found with experience, that to be successful, one must believe in the mission they are supporting and I believe in STARS-US’ mission. It is unbelievable that there are so many individuals who are suffering with Syncope and have nowhere to turn for support and guidance. Well, they do now!!

Much has been accomplished since our launch October, 2007. Information and educational literature is now available, the website is live, we have our own signature event, STARS-US Yacht Hopttm contacts and relationships are being established, and volunteers have generously given their time to spread the word throughout the United States that STARS is here.

Volunteers are vital to our success. They are our true advocates!!!

I would like to take this opportunity to introduce to you our very first volunteers, STARS-US Board of Trustees. We are honored to have such a distinguished group of professionals supporting STARS and our ever so important mission.

STARS-US Board of Trustees Trudie Lobban, Founder and Chief Executive of STARS and STARS-US Trudie Lobban, established STARS in 1993 in the UK, after her youngest daughter Francesca, was diagnosed with RAS. Since then she has personally answered tens of thousands of letters, emails and phone calls from sufferers, their family members and caregivers across the world affected by Syncopes and RAS. She has initiated and organized many patient/caregiver conferences as well as organized the first International Medical Symposium for healthcare professionals.

Trudie has brought together a multi-discipline group of professionals consisting of pediatricians, geriatricians, neurologists and cardiologists to form the STARS Medical Advisory Committee. She has been invited to present and participate regionally, nationally and internationally at medical and patient caregiver conferences.

Because of the overwhelming response from American sufferers and their families she has established STARS-US to continue helping those who suffer from Syncope and RAS throughout the world.

Linda Kadesch Hilton Head Island, SC Linda was appointed to the Board of Trustees, June, 2006. Linda resides on Hilton Head Island, South Carolina where she is the office manager working in partnership with her husband. Linda has a personal interest in STARS US as her niece suffers from Syncope. She has experienced firsthand what it is like for a family to manage living with Syncope. She is committed to helping others who suffer to overcome these conditions

(843) 785-4101

www.stars-us.org 1

rsmith@stars-us.org

J. Philip Saul, M.D., Division Director of the Children’s Heart Center of South Carolina.

MUSC Children’s Hospital, Charleston, SC Dr. Saul was appointed to the Board of Trustees, January, 2008. He graduated magna cum laude from Duke University with a bachelor’s degree in physics in 1978. After completing his undergraduate degree, Dr. Saul remained at Duke University where he received his medical degree in 1982. Following medical school, Dr. Saul went on to the Children’s Hospital in Boston and completed his internship and residency in pediatrics. Dr. Saul furthered his training through a fellowship where he focused on cardiology and cardiac electrophysiology. Dr. Saul’s major research interests are control system analysis of the heart and circulation, along with genetics of electrical and structural congenital heart disease. In addition to his clinical role, Dr. Saul has a number of administrative responsibilities, including vice-chair for clinical affairs of the department of pediatrics and medical director of MUSC Children’s Hospital. Dr. Saul is involved in numerous professional societies including the International Scientific Organizing Committee, the North American Society of Pacing and Electrophysiology, the International Society for Holter & Noninvasive Electrocardiology, the American Heart Association and is also a fellow in the American College of Cardiology. Among Dr. Saul’s honors and awards include selection to the Society of Pediatric Research and “America’s Top Pediatricians” by the Consumer Research Council.

Robert S. Sheldon, M.D., Professor of Medicine, Associate Dean of Clinical Research, Vice-President Research Calgary Health Region University of Calgary, Canada Dr. Sheldon was appointed to the Board of Trustees, June, 2006. He received a B.Sc. from Bishop’s University, Quebec, and his PhD from the University of Colorado. He did postdoctoral research at the Medical Research Council Laboratory of Molecular Biology in Cambridge, England and at the Department of Medical Genetic, University of Toronto. After receiving his M.D. from the University of Toronto, he moved to Calgary where he finished his training in Cardiology and Arrhythmia disturbances. Dr. Sheldon is Chair of the Cardiovascular Research Group and the Division of Cardiology at the University of Calgary. He has an active clinical research group dedicated to understanding the causes, diagnosis and treatment of fainting.

Carlos A. Morillo, M.D., FRCPC, FACC, Professor Department of Medicine, Director Arrhythmia Service, Cardiology Division, Director Syncope and Autonomic Disorder Unit McMaster University-Population Health Research Institute Ontario, Canada Dr. Morillo was appointed to the Board of Trustees, December, 2007. Born in Colombia, he received his cardiology training in Colombia and at the University of Western Ontario, Canada, where he pursued his electrophysiology training. In 2002 he joined the faculty at McMaster University as a Professor and is currently the Director of the Arrhythmia Service and Coordinates the Syncope and Autonomic Disorder Unit. His research interests have been in the area of autonomic modulation and therapy of neutrally mediated reflex syncope, chronic orthostatic disorders and the prevention of atrial fibrillation, atrial remodeling with ACE Inhibitors, ARB’s and hypertension. Dr. Morillo developed the first animal model of sustained atrial fibrillation and paved the way to the development of ablative strategies for this very common arrhythmia. Currently, Dr. Morillo is participating in several clinical trials related with the management of patients with recurrent neurally mediated reflex syncope such as the Prevention of Syncope 2 Trial and the ISSUE trial.

(843) 785-4101

www.stars-us.org 2

rsmith@stars-us.org

Blair P. Grubb, MD, FACC, Professor of Medicine and Pediatrics, Director, Electrophysiology Services University of Toledo, Heath Science Campus University of Toledo College of Medicine, Toledo, OH Dr. Grubb was appointed to the Board of Trustees, June, 2006. He earned an under graduate degree in Biologic Science from the University of Maryland. He received an M.D from the Universidad Central del Este in the Dominican Republic. Dr. Grubb completed his residency training at the Greater Baltimore Medical Center where he was also Chief Resident. He completed a fellowship in Cardiology and Electrophysiology at the Pennsylvania State University. He is presently a professor of Medicine and Pediatrics at the Medical University of Ohio where he is also director of the Electrophysiology Program at the University Medical Center. Dr. Grubb has authored over 160 scientific papers as well as two books, and multiple book chapters. As one of America’s top doctors and a renowned specialist on Syncope and POTS, he is invited to speak at medical conferences around the world.

Daniel Beach, Global Director of Communications, Medtronic Cardio Vascular Medtronic World Headquarters.

Minneapolis, MN Daniel was appointed to the Board of Trustees, October, 2007. Currently, Daniel is the Global Director of Communications for Medtronic Cardio Vascular where he leads global communications strategy for one of Medtronic’s fastest-growing and largest businesses. During his career Daniel has provided strategic leadership for initiatives covering many disciplines including positioning and messaging, public and media relations, issues preparedness, crisis management, medical education, clinical trial recruitment as well as advertising and branding. Daniel is not a stranger to STARS. He has spent considerable time forging both relationships with, and new initiatives for, STARS and the Arrhythmia Alliance. In February 2007, Daniel also joined the Executive Committee of the Arrhythmia Alliance in the UK.

SAVE THE DATE STARS-US AWARENESS WEEK JUNE 9-15, 2008 Be on the lookout for more information on how you can participate.

For more information, to volunteer, contact: Rebecca Smith

(843) 785-4101

rsmith@stars-us.org

www.stars-us.org 3

(843) 785-4101

rsmith@stars-us.org

CALLING ALL VOLUNTEERS The United States is huge and we need your help.

It is vitally important to spread the word that STARS-US is here to help those who are caring for or suffering from syncope. They need to know they are not alone.

That there is help and support!!!

YOU CAN HELP MAKE A DIFFERENCE… BY VOLUNTEERING Marketing - Distribute STARS-US information to doctors’ offices, libraries, friends, family, neighbors. For STARS brochures contact Rebecca Smith.

Fundraising - This is a great way to create awareness as well as raising funds for STARS-US programs. Whether it’s a lemonade stand or a black tie ball it’s creating AWARENESS. To help you with your fundraising, information packets are available. If you would like to host a fundraiser contact Rebecca Smith.

‘Shine a Light on Education’ - Sit on this committee and help to educate the schools on Syncope by proofing educational materials and/or be a volunteer advocate and present the materials to the schools.

Website - Submit your story for the website. It helps so many to know they are not alone. Tell others your story, whether you are a care giver/family member or sufferer. How has STARS helped you? Please include your picture too.

To volunteer contact: Rebecca Smith rsmith@stars-us.org (843) 785-4101

4

Everyone should know that they are not alone... didn’t really know, they just kept sending me from one doctor to another doctor for tests.

They always ask tons of questions and always the same ones. They poke me with needles (needles also make me pass out so I pass out again), take MRI scans and x-rays, blood pressure checks, EEGs, EKGs, heart monitors (I had both kinds, 1 for 48 hours the other I had to wear all the time for a month).

There are several things (triggers) that cause me to faint, When I get hurt or feel pain, if I see blood, really loud noises, or if I get scared or frightened, basically anything I don’t expect to happen that startles me will trigger my passing out.

I never knew any one that has this condition.

Some kids at school have asthma, diabetes and leukemia but everyone knows about it. The teachers, parents even the kids.

It seems like nobody has ever heard of what I have. At first I felt like I was the only one on earth that ever passed out. My mom had to tell everybody! Every single person I knew she had to tell. The school principle, all my teachers, bus driver, gymnastic instructors, neighbors, and playmates over and over again what syncope was, how to help me, if it was contagious, and that I didn’t need special treatment or classes and even that it was NOT life threatening. I felt horrible. Some parents were even afraid to invite me to birthday parties and play dates. It is so unfair. People are afraid of me only because they don’t understand about it.

Before I got the diagnosis it was hard telling medical people the same things about what happens to me. Since I

My parents thought maybe I should be home schooled and pulled me out of school. They didn’t want me to feel bad all the

(843) 785-4101

www.stars-us.org

Hello, my name is Hannah, my friends call me Peanut.

I’m 10 years old and have vasovagal syncope. That’s a pretty big word for passing out or fainting. I don’t get any warning signs before this happens and find myself waking up on the ground. I get scared and sometimes start to cry. I’m usually okay after just a few minutes but sometimes I get really tired and need to sleep for a while.

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time. They just wanted me to be safe. Even though I wasn’t any safer really at home at least they know what to do if I had an episode. My doctors tell me I’m not the only one with this and that many people have this condition so not to fret about it so much.

They all said I should go back to school. I had my own questions about all the people that have this condition and I asked, “Who are they?”. “Where are they?”, “Is there another girl just like me?”. “I want to know them.”

I was so happy to find out about the STARS organization and their web site that explains everything about what I have and how to help me. Not only that, but it has information for teachers and for anyone else that needs it.

The best part of all was finding friends like me on the chat group support page.

(Good there’s a moderator on there too) I get to meet kids just like me and I know these kids have the same problems I do. There we can talk about how we did today, doctor visits and support each other when we have bad days. It has really helped me a lot. I’m grateful to STARS. More people need to know about STARS-US. I think everyone should know that they are not alone.

“Peanut” Hannah Kurkechian Howell, Michigan

rsmith@stars-us.org

A Pacemaker for my 40th Birthday I hope my story helps people to know that they need to listen to their bodies. Don’t ever give up and don’t let anyone tell you that “it’s in your head”.

Persevere until they listen to you or until you find someone else who takes you seriously.

I would like to thank Trudie and the STARS organization for opening my eyes to the many faces of Syncope, the reasons and the cures.

Suzanne Stewart Michigan The first time I experienced symptoms of fainting was when I was 8 months pregnant. These symptoms persisted when I took up 5K race walks. Then one evening while watching a movie with my husband I slumped over unconscious.

doing physical exercise testing at the hospital. I was observed overnight in a large cardiology unit, told I had heart rhythm problems and that I needed a dual chamber pacemaker. The pacemaker was implanted on my 40th birthday!

I continued to pass out occasionally. On my daughter’s 9th birthday, with my husband in the hospital I passed out and ended up in the hospital, myself. Days later I passed out again and hit my head as I fell. I was seen by a neurologist where an ENG (Electromyography) test showed facial nerve damage from the fall!

The pacemaker has solved 99% of my loss of consciousness problems. I feel so lucky, even more so when I was seen by Dr. Blair Grubb (now a Board Member of STARS-US).

He explained I had dysautonomia and my brain was not sending the right messages to my heart. The pacemaker keeps this correct.

I first saw a cardiologist in 1991 who ran several tests and diagnosed me with NCS (Neurocardiogenic Syncope).

My husband and I were involved in a car accident where I was unconscious for 30 mins, sustained multiple injuries including some brain injury.

Following this I passed out frequently, even

I have not lost consciousness since my pacemaker was implanted.

Yes, I have had pre-syncopal symptoms where I thought I would pass out but my pacemaker has ’clicked-in’.

I have been offered a drug called Midodrine and after reading the success for others in previous STARS newsletters I have decided to give it a try.

(843) 785-4101

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STARS-US Would like to welcome to the STARS family

Sir Elton john

rsmith@stars-us.org