cry unit 1140b, the axis centre, cleeve road, leatherhead, surrey, kt22 7rd. tel: 01737 363222 fax:...

CRY Unit 1140B, The Axis Centre, Cleeve Road, Leatherhead, Surrey, KT22 7RD. Tel: 01737 363222 Fax: 01737 363444 Web: www.c-r-y.org.uk www.sads.org.uk e-mail: [email protected]

CRY is the only organisation that focuses exclusively on the issue of young sudden cardiac death

http://www.c-r-y.org.uk/

http://www.sads.org.uk/

mailto:[email protected]


CRY is the only organisation that focuses exclusively

on the issue of young sudden cardiac death

Through CRY’s work since it was founded in 1995 we are finally

starting to understand the magnitude of the problem

The number of apparently fit and healthy young people believed to be dying every week in the UK of undiagnosed heart conditions

1995 Only 1 a week Anecdotal evidence

2000 4 to 8 a week Anecdotal evidence

2004 At least 8 every week Anecdotal evidence

2008 At least 12 every week published data (ONS*)

The Statistics on Young Sudden Cardiac Death





Young Sudden Death in sport

Marc-Vivien Foé (1 May 1975 – 26 June 2003)

Fabrice Muamba (17 March 2012)





Claire Squires (London Marathon 2012)

Young Sudden Deathmost deaths are not in elite athletes





Young Sudden Deathnot just elite athletes

Your story





CRY aims to reduce the incidence and impact of young sudden cardiac death by:

Raising Awareness

Support & Counselling

Cardiac Screening

Research

CRY Aims to Reduce the Incidence and Impact

Saving young people before a tragedy occurs

Supporting people after a tragedy occurs





Sir Ian Botham OBE, Honorary President of CRY

“We must stop these terrible tragedies. Youngsters are dying

needlessly – we can and must change things.”

"At the end of the day these deaths are indiscriminate. They

affect all sorts of people - amateur sportsmen, professional

sportsmen, a guy playing on a pitch, a kid at a school sports

day. It is something that must be addressed and has been

swept under the carpet for too long."

Raising Awareness with CRY Patrons






Sir Steven Redgrave CBE

"I am pleased to be a patron of CRY having had first hand experience of the impact of such a death.

Robert Hayley was my best friend and crewmate. He was extremely fit and we had just recently as juniors won a senior race together. We had been watching TV.

He suddenly stood up and died of what we were told was a cardiac abnormality. He was 17. That memory is always with me. Supporting CRY's work is something I am delighted to be part of."





John Inverdale

"Howard English was a friend who was an amazing guy and an outstanding rugby player. The ultimate Bon Viveur. It was a truly shocking moment when he died suddenly during one of our rugby games. When someone dies in your arms like that on the side of a rugby pitch it is not something you ever forget. It was tragic beyond belief when Howard's death was compounded by the death a decade later of his son Sebastian, whilst playing rugby just like his Dad.

No-one knew that the condition that had killed Howard could be genetic. CRY's screening programme is fantastic and it is good news that they are now going to be screening our young rugby players. In Italy they have compulsory testing of athletes and it seems so patently obvious that we ought to be doing this too. As a Patron of CRY I want to do all I can to help promote their programme.”






CRY Heart Costumes at the London Marathon

Raising Awareness with the General Public, Medical and Sporting Communities

Through raising awareness young lives are saved

1. Family history of young sudden death

2. Symptoms that increase risk

3. Those at risk who have no symptoms





Raising Awareness Saves young lives when there is a family history

Family history of young sudden death

After a young sudden death the family members need to know;

• where to go for emotional supporto Talk to CRY Founder and CEO o Support

o Bereavemento Diagnosed / myheart

• the cause of death o Unascertained/natural death!o Expert pathology

• if others are at risko Genetic conditionso Expert cardiology referral CRY supporter Laura John (2004) tossing the

coin at Wimbledon Men’s Singles Final





19 volunteers with experience of a similar tragedy undertaken CRY's accredited counselling training to help others adjust.

Bereavement Supporters complete a two year BAC accredited Counselling Skills and Theory course.

Following a young sudden cardiac, death families often seek emotional support and further information.

Individual Support - CRY’s Bereavement Support Network

Support for Families through CRY’s Bereavement Support Programme www.c-r-y.org.uk/living_with_loss.htm

Group Support - CRY’s Bereavement Support Days

Regional bereavement support days Scotland, Northern Ireland, North, South

National bereavement support days in Birmingham specifically for siblings, partners, mothers and fathers.




What is myheart?for young people (age 12 and 35) diagnosed with a cardiac condition

Meetingsmeet with other young people with similar conditions talk about your experiences in a supportive environment ask a specialist questions in an informal setting

Help from myheart memberscontact others with similar conditions.

Newsletter and websiteregular newsletters www.myheart.org website

All of the support services CRY offers are free


Support for Those Affected through CRY’s myheart Network





The CRY Centre for Cardiac Pathology (CRY CCP) Established in 2008

Unexplained sudden death often recorded as 'natural causes'.

Most tragedies due to sudden cardiac death.

Fast-track expert cardiac pathology service Cause of death identified in 2 weeks , Prior to this service they could wait up to 24 months.

Service lead by world expert Dr Mary Sheppard

Until the cause of death is determined it is often not possible to test other family members who may be at risk from the same cardiac abnormality.

The CRY centre is Fully funded by CRY and now based at St George’s Hospital to work alongside the CRY Centre for inherited cardiac conditions

The importance of correct pathology cannot be overstated as it gives families the opportunity to obtain valid answers to the cause of death and to quantify the risk posed to other family members.





Professor Sanjay Sharma heads up a team of specialist doctors based at St. George's Hospital, London.

Services for:

• affected families, • competitive athletes and • the general population

CRY funds the machinery, 6 doctors / research fellows, a physiologist, and a nurse

At these fast-track clinics families will be seen - Within a few weeks of referral, after the sudden death of a young family member- Have all tests on the same day - Be seen together as a family unit

The CRY Centre for Sports Cardiology (CRY CSC) provides a specialist service for expert clinical cardiac diagnoses of elite athletes.

London Screening clinic at weekends for the general public

The CRY Centre for Inherited Cardiovascular Conditions and Sports Cardiology





Support for families through Medical Information

CRY’s YouTube channel: www.youtube.com/user/cryvideos




http://www.youtube.com/user/cryvideos


Raising Awareness Saves young lives when there are symptoms

Symptoms that put you at risk

family history of YSCDchest pain (exercise related) passing out (syncope)breathlessness palpitations dizziness





The simple way to diagnose most cardiac abnormalities is a quick, painless and affordable procedure called an electrocardiogram (ECG).

CRY’s screening service is available to any person aged between 14 and 35.

Raising awareness of the importance of cardiac screening for all young people

80% of young sudden cardiac deaths are asymptomatic

89% reduction in young sudden deaths when screening is implemented

1 in 300 people have potentially life threatening conditions

1 in 100 have less serious cardiac abnormalities

In 2013 currently tests over 13,500 young people each year 45 people with potentially life threatening conditions 135 with less serious condition

International recommendations that screening should be in place prior to participation in sport, in Italy this has been law since 1982.

The majority of young sudden deaths do not occur in elite athletes, they are at grass roots





CRY tests many of the leading

UK athletes, including;

GB Rowing, GB Cycling,

GB Swimming, GB Diving,

GB Boxing, UK Athletics,

Premiership Football Teams

(e.g. Manchester City,

Tottenham),

England Cricket,

The Lawn Tennis Association,

SKY Cycling.

CRY tests all Aviva Premiership

Rugby players, England

representative and Regional

Academy players above the

age of 16

Philips have provided CRY: 2 CX50 Portable ECHO machines, 1 Ie33 3D echo machine &4 ECG machines; plus funding to test all elite GB athletes leading up to the 2012 Olympics.

The European Society of Cardiology (ESC) and International Olympic Committee (IOC) recommend cardiac screening for any young person participating in competitive sport.

In countries such as Italy, screening for those participating in representative sport is mandatory. This is also the case in some professional sports (UEFA, FIFA, UCI)

For some professions (e.g. pilots) cardiac testing is also mandatory.

Cardiac Screening for Elite Athletes in the UK

Sport itself does not lead to cardiac arrest but can trigger a young sudden death by aggravating an undetected abnormality.





CRY’s Cardiology Research Team is Leading the Way

CRY's screening programme not only identifies people at risk, but also provides data for vital research into the prevalence and management of cardiac abnormalities.

The findings are published in reputable, peer-reviewed journals and our guidelines are internationally recognised.

CRY was the first organisation to:

identify the upper limits of wall thickness and cavity size in British athletes;

characterise cardiac dimensions in adolescent athletes – knowing how to differentiate pathology (disease) from physiology (normal because of exercise) is vital for diagnosis;

characterise ECG changes in athletes in a document that is now the blueprint for the European Society of Sport Cardiology;

look at cardiac adaptation for Caribbean athletes, as they differ from Caucasian athletes in the way they adapt to exercise.

CRY has also been pivotal in identifying the prevalence of conditions such as hypertrophic cardiomyopathy (HCM) in athletes.

www.c-r-y.org.uk/research.htm





Maximising the impact by linking with families within the community

Maximising awareness and fundraising through PR and social media

CRY’s success has been driven by local communities

Local communities support CRY families

FacebookThrough Facebook, CRY is reaching those most likely to benefit from our services.

TwitterThrough Twitter we can see the impact of CRY’s messages being maximised, as supporters re-tweet

/CardiacRiskintheYoung

@CRY_UK

/cryvideos





When a young person dies suddenly many people suffer;

the effect is not isolated to the person who died

It affects:

their family, friends, peer group, and local community

600 fit and healthy young people die every year in the UK

due to Young Sudden Cardiac Death

Thousands of people every year suffer the tragedy

of losing a person they loved dearly

The impact of a sudden death is not an isolated event





Thank you for your support

CRY is an independent charity that only survives thanks to the

ongoing efforts of its supporters. Many (though not all) CRY

supporters have suffered a bereavement, and are working to

stop other families having to endure a similar tragedy.





Tel: 01737 363 222Fax: 01737 363 [email protected]

CRY’s vision is…

To work with cardiologists and family doctors to promote and protect the cardiac health of our young, by establishing good practice and screening facilities devoted to significantly reducing the frequency of young sudden cardiac death throughout the United Kingdom




cry unit 1140b, the axis centre, cleeve road, leatherhead, surrey, kt22 7rd. tel: 01737 363222 fax:...

Documents

young sudden death

cleeve road

axis centre

healthy young people

supporting people

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week anecdotal evidence

sorts of people