P2 Parliamentary Reception 2010 P3 My Kilimanjaro
Newsletter 03 Winter 2010
P4 About myheart
News and information for young people living with cardiac conditions
James Bailey went to a CRY screening that was held at his school. When he was diagnosed with Wolff-Parkinson-White (WPW) syndrome it came as a complete shock. James, who was 17 when he was screened, remembers, “I first heard about CRY when they came to my school to do screening. I signed up, not expecting anything to be wrong but then unfortunately I was diagnosed with Wolff-Parkinson-White. I was very shocked. I’d signed up not expecting anything to be wrong – I played football basically every day.”
James with Pixie Lott at the Parliamentary Reception WPW syndrome is caused by an extra electrical connection between the chambers of the heart which causes a rapid heart 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 initial diagnosis. This included an echocardiogram (ECHO) which looks at the flow of blood in and out of the heart and is similar to the ultrasound scan that a pregnant woman has to check the health of her baby. James continues “But afterwards I saw consultants and realised at least its something which can be treated. I was put on medication for 2 months to stabilise my irregular heart rhythm and I’ve had the cardiac ablation operation and now everything’s fine and now I hope to help CRY to help others.” The surgery James underwent is called radio frequency ablation. This procedure destroys the extra electrical pathway in the heart. Since his surgery James has been keen to raise awareness and funds for CRY. He has had an article published in the Daily Express about his experience and has spoken on behalf of CRY at the launch of the CRY Centre for Inherited Cardiovascular Conditions and Sports Cardiology in April 2010 and the Parliamentary Reception in October 2010, “I think it’s so important that CRY helps raise awareness of such problems and save people like me.” For more information on WPW visit www.c-r-y.org.uk/wpw.htm
James’ experience featured in an article in the Daily Express 25/05/2010
Article reproduced with permission
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Parliamentary Reception 2010 CRY hosted its annual Parliamentary Reception at Westminster on Wednesday 13 October as part of its raising Awareness Week. New CRY Patron Pixie Lott was Guest of Honour at the event which was attended by more than 40 MPs. Other guests at the event included members of myheart, CRY families and supporters, CRY Bereavement Supporters, medical professionals and CRY Patrons Ben Brown, Simon Halliday and Roger Taylor MBE. There were a number of speakers at the event - MC for the evening, Dr Julian Lewis MP (standing in for Roger Gale MP who was unwell); The Minister of State for Health, Simon Burns MP; CRY Consultant Cardiologist, Professor Sanjay Sharma; CRY Chief Executive, Alison Cox MBE; and myheart member, James Bailey who said “I remember going to school that day just laughing and joking with my friends and then coming out and realising I had this problem, I then made the huge mistake of looking it up on the internet which really frightened me – although I did find out that Meatloaf and Marilyn Manson both had the same problem. I’d like to thank CRY for all the work they do and continue to do and, I know it sounds very clichéd, without them I might not be here today.” As well as summarising CRY's achievements and growth over the 15 years of the charity's existence, speakers also talked about some of CRY's current and future initiatives. One important announcement was
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the imminent release of a CRY medical information DVD. This project was instigated by Gareth Mallon of the East Midlands Ambulance Service for distribution to Ambulance crews in his region; but the DVD will also be made available to all kinds of medical professionals throughout the UK. Gareth says “My idea with the ambulance service is to make our staff aware 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 of Honour, Pixie Lott. Pixie sang three numbers to a very appreciative audience, before posing for photos with many of the guests. Pixie's appearance at Westminster was also filmed for CBBC's Newsround programme, with young guest Tom Phillips acting as interviewer for the piece. Joseph Tanner, myheart member and regular guest at the CRY Parliamentary Receptions said “These evenings are very important. It’s a great opportunity to meet the MPs….and it’s also great to meet Pixie Lott as well!” A video from the event can be seen on the CRY youtube channel at www.youtube.com/user/cryvideos
My Kilimanjaro Tony Eames was hoping to climb Kilimanjaro to raise awareness of long QT syndrome which he suffers from. However, his cardiologist advised against it. Unfazed by this, Tony found an alternative 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 story and can help raise funds for CRY. Following the diagnosis of long QT syndrome my life has dramatically changed (not just with my pacemaker); it makes me realise how lucky I am to be able to do this type of activity.” Tony and his sister Rachel Bellon took part in the 60km Just Walk challenge across the South Downs on 15 May. This is Rachel’s account: My brother has been in contact with CRY for some years now as he was diagnosed with long QT syndrome at 12 years old. He is now 30 and on his 3rd pacemaker. Earlier this year I was looking for fundraising events when I came across Just Walk 2010. On a Saturday afternoon over a few pints in a pub with Antony and friends, I suggested we do the walk as a brother/sister bonding experience ‘Well we can’t do the 10 or 20km as they’re family walks and no-one will sponsor us, if we do the 40km we may as well do the 60km!’
Just before 20km the 40km walkers turned off the path and just us hardy 60km walkers were left. Passing through Arundel and Amberley the scenery was stunning and we could really begin to appreciate the beauty of the South Downs Way. Still going strong with a bounce in our step (thanks to compeed!!) we reached the 36km station, where the medic’s onsite pulled some walkers out of the walk. After a quick drink we tackled Bignor Hill, which seemed to go on forever, the promise of a hot meal at the top keeping everyone going!
At first he seemed to think the walk would be easy, so he decided to ask his cardiologists if he could do Mt. Kilimanjaro instead, the simple answer was NO. So he settled for my ‘easy’ walk and we signed up. Only when we started our weekend training did we realise the full extent of what we were undertaking!! I had imagined 10km walk, cup of tea, another 10km, another cup of tea. In actual fact, there were 8 power stations along the way giving us tea and refreshments; however the reality of the time and pain was something we hadn’t prepared for.
It wasn’t until we had only 8km left did the pain really start to set in and our energy and cheery banter faded and the finish line seemed to get further and further away! Armed with head torches we finally finished at 9:50pm, running over the finish line to rapturous applause from the stewards awaiting our return!
We arrived at Goodwood racecourse at 7am and were treated to a bacon buttie and cup of tea before the walk officially started at 8am with lots of enthusiasm from the fellow walkers around us.
Many families aren’t as fortunate as us and have to raise money in memory of someone, I’m one of the lucky ones and Antony is an inspiration to everyone, proving that if diagnosed you can live life to the full with long QT. Between us, we’ve raised approximately £2,000 for CRY which is fantastic.
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About What we can do for you
How to get involved
It is estimated that one in 300 young people aged 35 and under who undergo cardiac screening are found to have a potentially life-threatening cardiac condition that will require treatment. With an increasing number of young people now being screened every year through CRY clinics and mobile units, even more people are likely to need emotional support and information to help them cope with their diagnoses.
This is your newsletter. We need you to let us know about the issues that matter to you and what you want to see covered in these pages. We could, for example, have a Questions and Answers section to deal with important issues such as travelling advice, getting back to sport, recovering from surgery, living with a pacemaker or ICD etc. Tell us what you think. And, of course, we would like to include your own stories and photos. Please send these to us, along with your comments and feedback.
Get in touch
“I was diagnosed with long QT and given a pacemaker which has now become my best friend. I thought I’d never get used to it, but now I wouldn’t ever consider not having it. It’s a good conversation starter!” Rebekah Goddard myheart (previously the Surgery Supporters Network) was created 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 experiences and 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 group counselling and talk to an expert cardiologist in comfortable surroundings – a unique opportunity. We need your stories and news for future editions of the myheart Newsletter, please email to the newsletter editor, Mair Shepherd, at mair@c-r-y.org.uk
myheart members can be contacted through the CRY office. They are happy to help any young person who has had or may be undergoing implantation or ablation surgery, or those diagnosed with a cardiac condition who would just like to link up with others with a similar experience to share. If you would like to join myheart or contact members, you can email myheart Coordinator, Charlotte MacKenzie, at Charlotte@c-r-y.org.uk Or check out the myheart facebook page.
Useful links... www.c-r-y.org.uk/living_with_condition.htm Personal stories from young people living with rare heart conditions www.c-r-y.org.uk/Implantable_Cardioverter_Defibrillators.htm Useful information about implantable cardioverter defibrillators (ICDs)
The Surgery Supporters Network is now called myheart. This change of name reflects that support is 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.
This publication was made possible by a grant from the Brentwood à Becket Rotary Club.
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 4
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