STARS-US Board of Trustees

The Blackouts Trust

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 confi dence 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

Alexandra Whitman made the fi rst ‘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.

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

“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 fi rst syncopal attack in school. The original diagnosis of epilepsy was naturally 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.

“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 benefi t 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 effi cient and sympathetic support.” 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.

STARS Information Rep, Alexandra Whitman

Head Teacher, Marion Scott-Baker 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 refl ex 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.

STARS needs YOUR help to page 4 improve patient services Shine a Light on Education page 5 Naomi Fear’s Story page 8 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 STARS-US Board of Trustees page 1

Calling all Volunteers and page 4 STARS-US Awareness Week

“Peanut”, Hannah Kurkechian’s Story page 5

Suzanne Stewart’s StoryStory page 6

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.

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.

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.

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

Luckily I received a correct diagnosis very quickly – I had an irregular heartbeat and needed to have a pacemaker fi tted. 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!

“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 refl ex anoxic seizures.”

Welcome Sir Elton John