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For Parents

How can a healthy child or young adult have a heart problem, and collapse or die?

Older people die of "heart disease" and most health promotion, money for research, and hospital services are geared towards heart disease caused by old age (but may happen in younger people eg 35-70 through smoking, high blood pressure, diabetes, high cholesterol)
The diseases we are talking about HAVE NOTHING TO DO WITH THIS
SADS is about subtle diseases of young hearts, which cause the heart to suddenly go into an abnormal rhythm (ie stops beating normally)

So what are we talking about then?

We are talking about unusual diseases which are often inherited (run in families)
The blood vessels are healthy (this is the problem in older age heart disease) but a variety of problems may be wrong with the heart muscle or electrical conduction, sometimes at microscopic level
In the past these have either caused "unexplained" symptoms or deaths, or been mis-diagnosed, for example:
Epilepsy / fits / seizures / convulsions
Drowning / near-drowning (saved)
Panic attacks
Simple faints

Why haven’t I heard of this before?

2 main reasons, I suppose:

  1. Old age heart disease is common, and often preventable, so attracts a lot of publicity and research funding as it causes 25% of deaths of all of us in the end
  2. Only in the last 20 years have we realised the extent of the problem of young sudden cardiac death, and made the right diagnosis, and medical science has discovered that many genes (inherited through families) can are responsible for many cases

So can it happen to anyone?

  • Well yes – in that you wouldn't know you hadone of these heart problems, but in many cases there are clues:

there were warning symptoms which no-one realised were important

there have been the odd "unexplained" death in the family which no-one really stopped and thought about, or realised could be passed on to the next generation

So what are the clues that someone is at risk? I'm scared!

Don't be scared! These are not common diseases

Generally speaking there are 2 possible scenarios:

  1. A faint which wasn't typical – most faints happen if you are over-hot, over-full, stressed, standing up, etc and you felt like you were going to faint. These cardiac "faints" are more out of the blue
  2. Chest pain, breathlessness or dizziness during or after exercise – not just being unfit, but keeping up with everyone else to begin with, then something odd happens

Are there any other warning signs?

Yes there can be…

  • In your family is there a history of sudden, unexplained deaths (under the age of 40)?
  • Do you get unusually short of breath during exercise?(not explained by just being unfit!)
  • Do you get palpitations (eg, heart racing fast, missing beats, fluttering sensation, irregular pulse rate, thumping sensation in chest)?

What do I do if I'm worried?

If you think the answer to any of those questions might be yes, then see your own doctor

It's likely that you are fine

Oh – but someone else out there may not be OK, and might not know it…

  • make sure you and everyone you know gets CPR training! – we can't detect all cases but if everyone could do this, we'd save a lot of lives by preventing a cardiac arrest becoming a death

So can everyone’s life be saved?

Unfortunately no.

  • People who die of the old age heart disease or of other causes (eg cancer) will die in a rhythm which isn't VF…

Yes in younger people!

  • If the rhythm is VF, then the defibrillator will work if the shocks are delivered within 8 minutes
  • And only if they are getting good CPR
  • CPR alone doesn't rescue lives, it keeps people going until defibrillator is applied

Is there a much simpler way to understand the medical facts?

Yes - all these conditions can be roughly put into 3 categories

  1. Structural problems
  2. Electricity problems
  3. Cell problems (ion channels)

A heart with an abnormal structure (shape) can go into an abnormal rhythm. This can also happen if the shape is OK but the wiring is wrong. Or if the shape and wiring are OK, there can be microscopic problems in the cells themselves which make them fire off the electricity abnormally.

Cells?

Yes – cells are invisible to the naked eye, but they communicate together, generate electricity, cause the muscle to contract and bingo – the top 2 chambers contract, then the bottom 2, and the electricity follows the normal sequence

Or not!

Can you summarise all that please?

The upshot of all of that is that for any of these 3 types of problems SADS happens when

  1. A structural problem (someone is born with an abnormally formed heart) causes an arrhythmia (abnormal beating) – or
  2. An electrical problem causes it (the conduction from top to bottom isn't smooth) – or
  3. A cell problem (the cells don't coordinate as they should) causes electrical malfunction

Any of these can result in the heart abruptly stopping the normal thud-thud rhythm you are used to

What is the connection with sports? Is sport bad for you?

The arrhythmia can happen to any affected person at any time, but if the heart is stressed, it is more likely to happen

  • This explains the connection with sport – sports professionals or high flying sporty people can be ultra fit but suddenly collapse and die because the arrhythmia happens in seconds, at the time when the heart is pumping very hard and fast
  • For example, even US Marines have been shown to have a high rate of SADS – just because they are so fit
  • It's a bit ironic isn't it?!
  • So of course this doesn't mean sport is bad for you – it just causes the underlying problem to show up
  • And of course for all other people in the population, sport and physical fitness are so important

How many different diagnoses are there?

Actually there are lots

The list on the next slide contains the commonest diagnoses, within these 3 categories of problem

For information on these specifically, go to the Cardiac Risk in the Young website http://www.c-r-y.org.uk/medical_conditions.htm

or the Oliver King Foundation http://www.theoliverkingfoundation.co.uk/SADS.html

Classification of Causes in medical terms

Structural Heart Disease (SCD)

  • Cardiomyopathies (HCM, DCM, RCM, ARVC)
  • Myocarditis
  • Congenital heart disease (abnormal valves, chambers, or anomolous coronary arteries, from birth)
  • Marfan's

Conduction disease

  • WPW
  • Re-entrant pathways

Ion channelopathies (SADS)

  • Long / short QT Syndrome (natural or iatrogenic)
  • Brugada
  • CPVT (Catecholaminergic Polymorphic Ventricular Tachycardia)

What’s next?

So to summarise,

  • Young deaths are caused by different heart problems than the older people's type of heart disease
  • The 3 main problems (structural, electrical or cell) can all cause the heart rhythm to go wrong
  • This can cause palpitations, fainting or in the worst case scenario cardiac arrest (no pulse)
  • The underlying problems are something the victim is born with, and often microscopic, so the faint or cardiac arrest appears to be out of the blue

How do I know? What can I do?

  • If you think you may have symptoms see your own doctor
  • We can all save lives by learning CPR – this "buys time" while someone arrives with the defibrillator

Be positive!

  • Get educated!
  • Get involved!
  • Share the knowledge!