WPW syndrome is caused by an extra electrical connectionbetween the chambers of the heart which causes a rapidheart rate. James’ condition was detected during an ECG (electrocardiogram) test which measures the electrical activity of the heart.

He was sent for further tests at hospital to confirm the initialdiagnosis. This included an echocardiogram (ECHO) whichlooks at the flow of blood in and out of the heart and is similar to the ultrasound scan that a pregnant woman has tocheck the health of her baby.

James continues “But afterwards I saw consultants andrealised at least its something which can be treated. I wasput on medication for 2 months to stabilise my irregular heart rhythmand I’ve had the cardiac ablation operation and now everything’s fineand now I hope to help CRY to help others.”

The surgery James underwent is called radio frequency ablation. Thisprocedure destroys the extra electrical pathway in the heart. Since hissurgery James has been keen to raise awareness and funds for CRY. Hehas had an article published in the Daily Express about his experienceand has spoken on behalf of CRY at the launch of the CRY Centre forInherited Cardiovascular Conditions and Sports Cardiology in April 2010and the Parliamentary Reception in October 2010, “I think it’s so important that CRY helps raise awareness of such problems and savepeople like me.”

For more information on WPW visit www.c-r-y.org.uk/wpw.htm

1Winter 2010 |

Newsletter 03 Winter 2010News and information for young people living with cardiac conditions

JJaammeess wwiitthh PPiixxiiee LLootttt aatt tthheePPaarrlliiaammeennttaarryy RReecceeppttiioonn

James’ experiencefeatured in an

article in the DailyExpress 25/05/2010

Article reproduced with permission

James Bailey went to a CRY screening that was held at hisschool. When he was diagnosedwith Wolff-Parkinson-White (WPW)syndrome it came as a completeshock.

James, who was 17 when he wasscreened, remembers, “I first heardabout CRY when they came to myschool to do screening. I signed up, not expecting anything to be wrong butthen unfortunately I was diagnosedwith Wolff-Parkinson-White. I was veryshocked. I’d signed up not expectinganything to be wrong – I played footballbasically every day.”

P2 Parliamentary Reception 2010

P3 My Kilimanjaro

P4 About myheart

New CRY Patron Pixie Lott was Guest of Honour atthe event which was attended by more than 40 MPs.

Other guests at the event included members ofmyheart, CRY families and supporters, CRYBereavement Supporters, medical professionals andCRY Patrons Ben Brown, Simon Halliday and RogerTaylor MBE.

There were a number of speakers at the event - MC forthe evening, Dr Julian Lewis MP (standing in for RogerGale MP who was unwell); The Minister of State forHealth, Simon Burns MP; CRY Consultant Cardiologist,Professor Sanjay Sharma; CRY Chief Executive, AlisonCox MBE; and myheart member, James Bailey whosaid “I remember going to school that day just laugh-ing and joking with my friends and then coming outand realising I had this problem, I then made the hugemistake of looking it up on the internet which reallyfrightened me – although I did find out that Meatloafand Marilyn Manson both had the same problem. I’dlike to thank CRY for all the work they do and contin-ue to do and, I know it sounds very clichéd, withoutthem I might not be here today.”

As well as summarising CRY's achievements andgrowth over the 15 years of the charity's existence,speakers also talked about some of CRY's current andfuture initiatives. One important announcement was

the imminent release of a CRY medical informationDVD. This project was instigated by Gareth Mallon ofthe East Midlands Ambulance Service for distributionto Ambulance crews in his region; but the DVD willalso be made available to all kinds of medical professionals throughout the UK. Gareth says “Myidea with the ambulance service is to make our staffaware that yes young people do have cardiac conditions and all we have to do is take them seriously.”

Following the speeches, guests were treated to a surprise acoustic set by CRY Patron and Guest ofHonour, Pixie Lott. Pixie sang three numbers to a veryappreciative audience, before posing for photos withmany of the guests. Pixie's appearance atWestminster was also filmed for CBBC's Newsroundprogramme, with young guest Tom Phillips acting asinterviewer for the piece.

Joseph Tanner, myheart member and regular guest atthe CRY Parliamentary Receptions said “Theseevenings are very important. It’s a great opportunity tomeet the MPs….and it’s also great to meet Pixie Lottas well!”

A video from the event can be seen on the CRYyoutube channel at www.youtube.com/user/cryvideos

2

ParliamentaryReception 2010CRY hosted its annual Parliamentary Reception at Westminster on Wednesday 13 October aspart of its raising Awareness Week.

| Winter 2010

3

My brother has been in contact with CRY for someyears now as he was diagnosed with long QT syndrome at 12 years old. He is now 30 and on his3rd pacemaker. Earlier this year I was looking forfundraising events when I came across Just Walk2010. On a Saturday afternoon over a few pints in apub with Antony and friends, I suggested we do thewalk as a brother/sister bonding experience ‘Well wecan’t do the 10 or 20km as they’re family walks andno-one will sponsor us, if we do the 40km we may aswell do the 60km!’

At first he seemed to think the walk would be easy, sohe decided to ask his cardiologists if he could do Mt.Kilimanjaro instead, the simple answer was NO. So hesettled for my ‘easy’ walk and we signed up. Onlywhen we started our weekend training did we realisethe full extent of what we were undertaking!! I hadimagined 10km walk, cup of tea, another 10km,another cup of tea. In actual fact, there were 8 powerstations along the way giving us tea and refreshments; however the reality of the time and painwas something we hadn’t prepared for.

We arrived at Goodwood racecourse at 7am and weretreated to a bacon buttie and cup of tea before thewalk officially started at 8am with lots of enthusiasmfrom the fellow walkers around us.

Just before 20km the 40km walkers turned off thepath and just us hardy 60km walkers were left.Passing through Arundel and Amberley the scenerywas stunning and we could really begin to appreciatethe beauty of the South Downs Way. Still going strongwith a bounce in our step (thanks to compeed!!) wereached the 36km station, where the medic’s onsitepulled some walkers out of the walk. After a quickdrink we tackled Bignor Hill, which seemed to go onforever, the promise of a hot meal at the top keepingeveryone going!

It wasn’t until we had only 8km left did the pain reallystart to set in and our energy and cheery banter fadedand the finish line seemed to get further and furtheraway! Armed with head torches we finally finished at9:50pm, running over the finish line to rapturousapplause from the stewards awaiting our return!

Many families aren’t as fortunate as us and have toraise money in memory of someone, I’m one of thelucky ones and Antony is an inspiration to everyone,proving that if diagnosed you can live life to the fullwith long QT. Between us, we’ve raised approximately£2,000 for CRY which is fantastic.

Tony Eames was hoping to climb Kilimanjaro to raise awareness of long QT syndrome which hesuffers from. However, his cardiologist advised against it. Unfazed by this, Tony found analternative challenge - walking for 13 hours and nearly 40 miles to raise awareness and funds.Tony says “I am the lucky one who had in excess of 2,000 attacks but survived to tell the storyand can help raise funds for CRY. Following the diagnosis of long QT syndrome my life has dra-matically changed (not just with my pacemaker); it makes me realise how lucky I am to be ableto do this type of activity.” Tony and his sister Rachel Bellon took part in the 60km Just Walkchallenge across the South Downs on 15 May. This is Rachel’s account:

My Kilimanjaro

Winter 2010 |

4 | Winter 2010

About

What we can do for youIt is estimated that one in 300 young people aged 35 andunder who undergo cardiac screening are found to have apotentially life-threatening cardiac condition that will requiretreatment. With an increasing number of young people nowbeing screened every year through CRY clinics and mobileunits, even more people are likely to need emotional supportand information to help them cope with their diagnoses.

myheart (previously the Surgery Supporters Network) wascreated to offer support to young people (and their families) who have been diagnosed with a heart condition, who are recovering from cardiac surgery or perhaps living with a pacemaker or ICD.

Members email each other regularly to share experiencesand help each other cope with important issues such as:

� starting new schools, university or work� managing sports and social activity � living with an implant and being able to tell friends

about their condition.

Members meet up to socialise, take part in groupcounselling and talk to an expert cardiologist in comfortable surroundings – a unique opportunity.

This is your newsletter. We need you to let us know about theissues that matter to you and what you want to see coveredin these pages.

We could, for example, have a Questions and Answers section to deal with important issues such as travellingadvice, getting back to sport, recovering from surgery, livingwith a pacemaker or ICD etc. Tell us what you think.

And, of course, we would like to include your own stories andphotos. Please send these to us, along with your commentsand feedback.

myheart members can be contacted through the CRY office.They are happy to help any young person who has had ormay be undergoing implantation or ablation surgery, orthose diagnosed with a cardiac condition who would just liketo link up with others with a similar experience to share.

If you would like to join myheart or contact members, youcan email myheart Coordinator, Charlotte MacKenzie, atCharlotte@c-r-y.org.uk

Or check out the myheart facebook page.

www.c-r-y.org.uk/living_with_condition.htmPersonal stories from young people living with rare heart conditions

www.c-r-y.org.uk/Implantable_Cardioverter_Defibrillators.htmUseful information about implantable cardioverter defibrillators (ICDs)

How to get involved

Cardiac Risk in the Young (CRY) Head office: Unit 7, Epsom Downs Metro Centre, Waterfield, Tadworth, Surrey KT20 5LR Tel: 01737 363222 Fax: 01737 363444 E-mail: cry@c-r-y.org.uk web: www.c-r-y.org.uk

“I was diagnosed with long QT and given apacemaker which has now become mybest friend. I thought I’d never get used toit, but now I wouldn’t ever consider nothaving it. It’s a good conversation starter!”Rebekah Goddard

Useful links...

We need your stories and news for future editions of the myheart Newsletter, please email to thenewsletter editor, Mair Shepherd, at mair@c-r-y.org.uk

Get in touch

This publication was made possibleby a grant from the Brentwood à

Becket Rotary Club.

The Surgery Supporters Network is now calledmyheart. This change of name reflects that supportis available to any previously fit and healthy young person (35 and under) who has suddenly been diagnosed with a heart condition and was

inspired by the CRY Philips testmyheart tour.