Preventing young sudden cardiac deaths through awareness, screening and research, and supporting affected families.

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cry@c-r-y.org.uk

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    • After a Young Sudden Cardiac Death
      • Bereavement Support
      • Individual Support
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      • Coroner Inquest Support
      • Memorial Funds
      • My Story
    • Living with a condition
      • myheart – Support Network
  • Cardiac Screening
    • Frequently Asked Questions
  • Research
    • CRY’s Research
    • Research Fellows
    • Research Fellowship Grants
    • CRY Cardiology Conference
  • Medical Information
    • Resources for GPs
    • Sample ECGs
    • myheart – Support Network
  • Fundraising
    • Become a CRY Fundraiser
    • Fundraising Hub
    • Fundraising FAQ’s
    • Find an Event
    • Upcoming Supporter Led Events
    • Event Write Ups
    • Memorial Funds
    • Proceeds to CRY
  • Awareness
    • Ambassadors
    • In the Media
      • National News
      • Regional News
    • CRY Press Office
    • CRY Press Release
    • Parliament
    • Volunteer for CRY
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    • Contact Us
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Frequently Asked Questions

Service Evaluation – Frequently Asked Questions (FAQ’s)

We are extremely passionate about the work we do as a charitable organisation and regard this project as having immense potential to enhance the effectiveness of our nationwide cardiac screening programme. In doing so, we hope to increase the number of heart checks performed as well as identify and facilitate the management of individuals with undiagnosed

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04/03/2021

Why do I need a heart scan?

A heart scan is effectively another term for a cardiac ultrasound that is useful for identifying cardiac abnormalities such as problems with the valves of the heart or a hole in the heart. The heart scan will also show heart size and therefore is very useful at identifying cardiomyopathy. So we normally use heart scans in

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01/01/1970

What happens if something is found on my ECG?

There’s about a 4% chance that something will be found on the ECG. If we do identify an abnormality then we would recommend further investigations in the form of a cardiac ultrasound – which is what we perform most commonly – and sometimes patients are also required to have a 24 hour ECG and an exercise

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01/01/1970

My ECG is normal but I still have symptoms. What should I do?

A normal ECG usually excludes major problems. However, if someone is suffering from intermittent palpitations, it suggests that there’s an intermittent heart rhythm disorder that may not be picked up on an ECG when the patient feels perfectly well. In these situations, we would recommend a 24 hour ECG recording whereby an ECG electrode is attached

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01/01/1970

After looking at my ECG the doctor now wants to do an ECHO, is something wrong?

The ECG is done primarily to look for disorders of the electricity of the heart. However, the ECG can also provide important information regarding the size of the heart. So if the ECG shows that the left chamber or the right chamber is enlarged then the best way to confirm or refute this is to perform

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01/01/1970

My son / daughter needs a repeat. Should I be worried?

It is common practice for those individuals who have been screened under the CRY screening programme to be called back for a repeat screen. This is usually the case when we screen someone who's 14 or 15, who is still prepubertal. If we bear in mind that people reach puberty at different ages and the puberty

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01/01/1970

Why are some people asked to have an ECHO?

Assuming that the ECG has been read by a cardiac expert, most people who have an ECG will not require any further investigations. In some instances, the ECG may show up suspicion of a heart muscle disorder in the form of very large, what we call QRS complexes, which are these spiky bits on the ECG.

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01/01/1970

What will happen if I am found to have a condition?

If a condition is identified at the CRY screening programme, the individual will be referred to a cardiologist that has experience in managing conditions that cause sudden death in the young or managing individuals who play a lot of sport. The aim would be to treat the symptoms if there are symptoms; to identify individuals who

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01/01/1970

Will I have to stop playing sport?

The question about whether an individual can continue to play sport after a screening depends on what we identify. If a diagnosis of cardiomyopathy or an ion channel disorder is made then, based on the European Society of Sport Cardiology and the American Bethesda Guidelines, we would recommend that that individual does not perform any type

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01/01/1970

If something is found, how will this affect insurance or mortgages?

The impact of cardiac disease on insurance or mortgage is entirely dependent on the type of cardiac abnormalities. The identification of a cardiomyopathy or an ion channel disorder is serious because these conditions can shorten life span and will almost certainly have an important impact on insurance premiums. Most insurance companies would not be keen to

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01/01/1970

Is every condition you find curable?

Most conditions that cause sudden cardiac death in young individuals are not curable. However, we can identify individuals who are likely to die and reduce the risk of sudden death. Many of these conditions also cause symptoms that can be debilitating and these symptoms can be treated with drug treatment such as beta blockers. There are

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01/01/1970

Will my doctor be kept informed?

We screen several thousand young individuals per year and our current practice is to inform the individuals screened, or his or her parents if they're aged under 16, about the test that was performed and the result. 96% of people that are screened have nothing to worry about and are reassured and this is put in

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01/01/1970

Can I get the same tests done locally, privately?

An ECG can be performed on the National Health Service in individuals who have symptoms suggestive of cardiovascular disease or a family history of premature cardiac disease or sudden cardiac death. If an individual does not have any symptoms or a family history then this sort of investigation is not offered on the National Health Service

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01/01/1970

Can I get this done on the NHS?

Screening for conditions causing sudden cardiac death is not offered on the National Health Service if an individual does not have any symptoms or a family history of heart disease. In March 2005, the 8th National Health Service Framework Chapter in Cardiology was launched which was basically dedicated to arrhythmias and preventing sudden death in young

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01/01/1970

Can my GP do the test?

At CRY, the screening programme involves a health questionnaire and a 12 Lead ECG. The health questionnaire refers to symptoms suggestive of cardiac disease and a family history of premature cardiac disease. There is no question that a General Practitioner can ascertain information required on the health questionnaire. My concerns are about the 12 Lead ECG,

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01/01/1970

If I need to be referred, do I have to travel to London?

Following a cardiac ECG screening, between four and five percent of individuals will require further investigations. We always take the opportunity of offering these investigations at our CRY Cardiac Centre at King’s College Hospital or at the Olympic Medical Institute. However, we appreciate that some of these screenings take place very far away from London and

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01/01/1970

I'm over 35. Where can I get tested?

If someone is aged over 35 and wishes to have cardiovascular screening for conditions that can predispose to sudden death then that screening would be available on the National Health Service if the individual has symptoms suggestive of cardiovascular disease or a family history of hypercholesterolemia. If they don’t have symptoms or any family history then

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01/01/1970

My GP doesn't take my concerns seriously. What can I do?

There are certain symptoms and certain situations that should be taken seriously in young people. One of the major problems is that young people are perceived as the healthiest segment of our society and this perception is not incorrect. Many people feel that young people aged 20 or less are invincible and are very unlikely to

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01/01/1970

Screening identifies risk. Are there different levels of risk?

Screening, using the CRY screening programme, identifies people with conditions that may cause sudden cardiac death – but our screening programme alone does not identify risk. Risk stratification for conditions such as this involves quite detailed subsequent investigation with things like 24 hour ECG, exercise stress testing and sometimes even electrophysiological testing. There are certain situations

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01/01/1970

What can be learned from an MRI scan, exercise test, Holter monitor (24 hour ECG)?

Most individuals who have a cardiac problem will be identified with an ECG and an echocardiogram. You're probably aware that the ECG shows electrical problems of the heart and an echocardiogram reveals structural problems of the heart and gives us an idea of the heart size. In some situations, the echocardiogram is not as good as

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01/01/1970

What does it mean to be a carrier?

There are certain people who are gene carriers for some of the conditions such as hypertrophic cardiomyopathy or long QT syndrome but these individuals do not manifest any of the clinical features, ECG features or echocardiographic features of the condition. These types of individuals are known as obligate carriers. They can, however, pass the gene on

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01/01/1970

Are there certain sports which are pre-disposed to long QT?

There is certainly a connection between certain sport deaths and long QT syndrome. The most common sporting discipline that is associated with sudden death in long QT syndrome is swimming. The thought process is that the dive into the water at the beginning of a swimming contest incites an adrenergic surge – that is a rapid

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01/01/1970

Can I book an exercise stress test?

The exercise stress test could be regarded as an important part of screening for cardiac abnormalities. My personal opinion – in young people in whom the commonest cause of sudden death is from the cardiomyopathies or the ion channel diseases, is that an ECG and an echocardiogram alone is enough. However, there are lots of people

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01/01/1970

I've heard about CPR. Could you explain how this is effective in dealing with sudden cardiac death?

CPR stands for cardio pulmonary resuscitation and there are two forms of CPR. There's the basic CPR and there's the advanced CPR. Basic CPR involves cardiac massage and providing artificial breaths to someone whose heart has stopped. I believe that every British citizen should be trained in basic CPR – basic CPR can save lives. Basic

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01/01/1970

Would the ECHO pick up anything the ECG would miss?

The ECG is very good at picking up electrical faults of the heart but the echocardiogram is a much more detailed investigation that looks at structural abnormalities of the heart. So, minor holes in the heart, minor valve problems will be missed by an ECG but will be picked up with an echocardiogram. In my experience,

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01/01/1970

Why is it recommended that elite athletes have both an ECG and an ECHO?

Most people that play sport are evaluated with a simple ECG and a health questionnaire. However, the very elite athletes normally undergo an ECG and an echocardiogram. To be quite honest, ECG alone is inferior to an ECG and a cardiac ultrasound. The ECG alone will exclude important electrical faults of the heart but will miss

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01/01/1970

What is an ICD? What does it do?

An ICD stands for an internal cardioverter defibrillator. This is a device that is implanted into the body under local anaesthetic . The patient usually comes in as a day case to have the procedure done and the device lives just under the left collar bone. We make a 5cm incision under the left collar bone

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01/01/1970

Why aren't all schools equipped with a defibrillator?

If I had my way, all schools should be equipped with a defibrillator. Although sudden death in young people is rare, it does occur and when it does occur, it destroys lives and costs many, many life years. The terminal heart rhythm disturbance in individuals who die is ventricular fibrillation. There is only one treatment for

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01/01/1970

You mention there are sometimes symptoms. How important are symptoms?

Symptoms that an individual perceives are obviously important – they may be the first clue to someone harbouring a potentially serious condition. There are several symptoms that a young individual needs to be aware of that would forewarn them that there may be a cardiac problem and these include chest pain, central chest pain described as

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01/01/1970

What is SADS?

SADS stands for Sudden Arrhythmic Death and this is part of sudden cardiac death. However, SADS is defined as a sudden death whereby subsequent post mortem analysis and a toxicology screen fails to identify any obvious cause. In our experience, almost all of these conditions are due to an electrical fault that cannot be picked up

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01/01/1970

How important is expertise?

Expertise is extremely important, in fact expertise is the crux of our screening programme – without expertise, one opens themselves up to litigation. The conditions that we’re dealing with are rare, one considers that the prevalence of hypertrophic cardiomyopathy is one in 500, the prevalence of ARVC is one in 1000, the prevalence of Brugada syndrome

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01/01/1970

Does playing sport cause sudden cardiac death?

There is a relationship between sudden cardiac death and sport. However it is important to emphasise that sport is good for the heart. Sport reduces the risk of high blood pressure, it improves cholesterol levels and generally, it reduces the risk of someone dying from a cardiac problem. Indeed people who play sport on a regular

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01/01/1970

Why get tested? I am told there is nothing you can do for me if I am identified.

The antagonist could argue that screening for cardiovascular disease is a waste of time because once a disorder is identified, nothing can be done to prevent sudden death. I need to wipe these types of statements out, completely abolish them because there’s a lot that can be done otherwise there’d be no point screening. We can

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01/01/1970

What test will I have and how long will it take? What will they be looking for?

Screening for cardiac diseases can be a complex situation but we are trying to adopt a cost effective screening programme and this screening programme comprises of a health questionnaire which enquires specifically about the cardinal symptoms of cardiac diseases such as chest pain, breathlessness, dizziness, palpitations or black outs and also importantly enquires about family history

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01/01/1970

Who will be reading my test?

http://www.youtube.com/watch?v=ZWr6YOnVm5E At the CRY screening programme, all ECGs are read by a cardiac research fellow. ECGs deemed remotely abnormal are read by me. So, everybody with a remotely abnormal ECG has the ECG read by a junior cardiologist and a very senior cardiologist and based upon this, we make decisions regarding further investigations.

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01/01/1970

Do these tests identify all people at risk?

The current screening programme, which involves an ECG and a health questionnaire, will not identify all conditions that cause sudden cardiac death. There are conditions such as anomalous coronary arteries and premature coronary artery disease that will be missed by our screening programme. Having said that, conditions like the cardiomyopathies and the ion channel disorders and

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01/01/1970

What are the chances of having something wrong?

There are several things that can cause cardiac problems in young people. These can range from very serious conditions such as long QT syndrome or hypertrophic cardiomyopathy or minor conditions such as mitral valve prolapse. By that I mean a floppy mitral valve or a small atrial septal defect, by that I mean a very small

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01/01/1970

Do I need to bring anything with me for the test?

There is no need to bring anything with you, apart from yourself. This screening programme involves filling out a health questionnaire so it's important to bring details about your General Practitioner, any relevant medical conditions that you may have. Any medications that you may be taking, you need to be aware of what they are or

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01/01/1970

How many people need heart scans?

In the CRY screening programme, following a health questionnaire and an ECG, between four and five percent of individuals require a heart scan. We subject those individuals to heart scans, in whom we believe there may be evidence of a cardiomyopathy, a valve disorder or a hole in the heart. In general, we only identify a

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01/01/1970

My daughter only wants to see a female technician. Can this be arranged?

At Cardiac Risk in the Young, we have many technicians, of which I’d say 60 or 70% are female. There are no issues at all with a female wanting to be screened by another female technician and that would be fully possible at any of our screening programmes. We also ensure that there’s always a female

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01/01/1970

Once I have been screened will I need to be screened again?

Screening with an ECG is aimed at identifying people with cardiomyopathies or electrical disorders of the heart. In answer to the question, electrical abnormalities can be excluded with a one-off ECG, provided the patient has no symptoms. However, the situation is quite different with the cardiomyopathies. Let me give you the example of hypertrophic cardiomyopathy. Hypertrophic

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01/01/1970

Will I be able to talk to a cardiologist on the day?

We aspire to speak to all young individuals having cardiac screening because there’s a lot of anxiety associated with screenings. Unfortunately, some of these screening programmes are very large, involving 200 people on any given day and it’s very difficult to have a detailed discussion with a cardiologist if there are 200 people wanting the same

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01/01/1970

What is sudden cardiac death?

Sudden cardiac death can be simply defined as a sudden death from a cardiac problem within 12 hours of witnessed normal health.

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01/01/1970

I have a family history of high blood pressure. Does that matter?

Hypertension or a high blood pressure is usually familial, by that I mean it runs in families. If you have a parent that has high blood pressure, there's a very high chance that that individual will develop high blood pressure. High blood pressure is an important problem because it can cause stroke, it can cause heart

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01/01/1970

What if I have a family history of familial hypercholesterolemia?

A family history of hypercholesterolemia is very, very important. Familial hypercholesterolemia means that an individual has a very high circulating cholesterol concentration. Cholesterol is a major risk factor for the development of atherosclerosis, by that I mean furring up of the coronary arteries. People with familial hypercholesterolemias usually have heart attacks in their twenties and thirties.

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01/01/1970

What if I have a family history of ischemic heart disease?

A family history of ischemic heart disease may be important in the assessment of a young individual for conditions that cause sudden cardiac death. You may be aware that 25% of the British population will die from ischemic heart disease so it’s very common for us to obtain a family history of ischemic heart disease; grandma

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01/01/1970

When I was younger I was told I have a heart murmur. Does that matter?

Heart murmurs can be due to numerous things. They can be due to a problem with the heart valves, they may be due to a hole in the heart. Some children when they are born are identified with a heart murmur that is usually due to a hole in the heart. In many situations, if that

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01/01/1970

A family member has a cardiomyopathy. Does this mean it will be passed on to me?

Cardiomyopathies are usually familial, by that I mean they run in families and they are inherited as an autosomal dominant trait. That is to say that if a parent has a cardiomyopathy, there's a 50% chance that the cardiomyopathy will be transmitted to any one of their offspring. So in the context of a family history

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01/01/1970

If someone is overweight are they more at risk from these conditions?

Obesity predisposes to cardiac problems, it predisposes to high blood pressure, diabetes and cardiomyopathy. Obesity in itself is a separate morbid entity, it does not overlap with the genetic and congenital conditions that cause sudden death in young, apparently healthy individuals or athletes. Having said that, obesity needs to be tackled and maintenance of a body

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01/01/1970

I'm over 35. Can I be screened?

At the CRY screening programme, the upper age limit for screening is 35 years of age and there's an excellent reason for this. If one examines the epidemiological data on sudden cardiac death, then most deaths in people aged 35 or under are due to hereditary conditions affecting heart muscle and the electrical system of the

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01/01/1970

Why doesn't CRY screen people over 35?

If an individual is aged over 35 and wishes to be screened for conditions causing sudden cardiac death then I'm afraid that Cardiac Risk in the Young don't extend the screening programme beyond 35, we only screen people aged from 14 to 35. I've already answered why we screen people from 14 onwards, the big question

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01/01/1970

My child is 14. Can he / she be screened?

Screening for under 14's is possible but there are some issues with screening people who are under 14. The first is that below the age of 14, many people are still about to start puberty – they're prepubertal, and prepubertal individuals usually have immature hearts which may mimic conditions like arrhythmogenic right ventricular cardiomyopathy and the

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01/01/1970

Why doesn't CRY screen people under 14?

Our lower age limit for screening at CRY is 14 years of age. This is because we believe that most people at the age of 14 are well into puberty. This is important for us because conditions such as hypertrophic cardiomyopathy do not manifest fully until the pubertal spurt. Therefore there is a risk that if

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01/01/1970

Can I have an ECG if I'm pregnant?

The ECG is a very safe test and there are no issues with ECGs and pregnancy. The ECG does not involve any radiation or any chemicals into the woman's body. Numerous women undergo ECG testing because palpitation in pregnancy is very common and I would have no concerns with performing an ECG on a pregnant woman

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01/01/1970

If I don't do much sport will I still be able to get tested?

At CRY, we offer all young, apparently healthy individuals the opportunity to be screened. The screening programme is not just biased to people who play sport. I believe that most young people do exert themselves to some extent or not, I don’t know of many young people who will not run up and down stairs or

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01/01/1970

Can I still have the test if I have a hangover?

A hangover does not preclude ECG testing but I suspect any individual that’s hungover will also probably have a rapid heartbeat because one of the reasons that one feels hungover after alcohol is because of vasodilatation. The blood vessels in the body vasodilate and cause the headache. If the whole body is vasodilated, the heart rate

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01/01/1970

Preventing young sudden cardiac deaths through awareness, screening and research, and supporting affected families.

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Unit 1140B, The Axis Centre,
Cleeve Road, Leatherhead,
Surrey KT22 7RD

Tel: 01737 363222
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