FAQ

Many people who experience sudden cardiac arrest have no prior diagnosis — which is part of what makes it so devastating. However, there are warning signs that should always be taken seriously and investigated:

Unexplained fainting, particularly during or immediately after exercise, or in response to a sudden loud noise or fright.

Unexplained seizures that your doctor has not been able to explain with a neurological cause.

Palpitations — a racing, fluttering, or irregular heartbeat — that come on during physical activity.

Significant breathlessness or dizziness during exercise that seems disproportionate to the effort.

A family history of young sudden death — anyone in your family who died suddenly and unexpectedly under the age of 40, or who was found to have an inherited heart condition.

A known inherited cardiac condition in a close relative, even if you have no symptoms yourself.

If any of these apply to you or a family member, do not wait. Speak to your GP about a referral to a cardiologist, or ask specifically about a referral to an inherited cardiac conditions (ICC) clinic. Many inherited heart conditions are highly treatable when identified early.

Category: Cardiac Arrest

Yes. Sudden cardiac arrest can affect children and young people, and it is more common than most people realise. It usually happens because of an inherited heart condition that has not been identified — often because the child had no obvious symptoms beforehand.

Conditions that can cause cardiac arrest in children and teenagers include:

CPVT (Catecholaminergic Polymorphic Ventricular Tachycardia) — triggered by exercise or sudden fright, often presenting in the first two decades of life.

Long QT Syndrome — which can cause dangerous arrhythmias during exercise, swimming, or in response to sudden loud noise, and sometimes during sleep.

Hypertrophic Cardiomyopathy (HCM) — the most common inherited heart muscle condition, which can affect young people and is associated with exercise-triggered events.

ARVC (Arrhythmogenic Right Ventricular Cardiomyopathy) — a genetic condition that can affect young adults, particularly those who exercise regularly.

This is one reason why cardiac screening of young athletes, and the families of anyone who has experienced a young sudden death or been diagnosed with an inherited cardiac condition, is so important. If a child in your family has been diagnosed with an inherited heart condition, all first-degree relatives — including siblings — should be assessed by a specialist.

Category: Inherited Conditions

An ICD (Implantable Cardioverter Defibrillator) is a small device implanted under the skin, typically near the collarbone. It monitors your heart rhythm continuously and, if it detects a life-threatening arrhythmia, delivers a shock or pacing therapy to restore a normal rhythm. It works automatically — you do not need to do anything for it to act.

Not everyone with a heart condition needs an ICD. Whether one is appropriate depends on your specific diagnosis, your individual risk of a dangerous arrhythmia, and a detailed assessment by a specialist cardiologist.

ICDs are commonly considered for people who have already survived a cardiac arrest, and for some people assessed as being at high risk due to conditions including Hypertrophic Cardiomyopathy (HCM), Brugada Syndrome, CPVT, Long QT Syndrome, ARVC, and Dilated Cardiomyopathy. The decision is always individual — having one of these conditions does not automatically mean you need an ICD.

If you have been told you may need an ICD and want to understand the decision better, ask your specialist to walk through the reasons and what the alternatives are.

Category: Treatment

Having an inherited heart condition does not mean you will experience a cardiac arrest. It means you need the right specialist care, regular monitoring, and an informed conversation with your cardiologist about your personal risk profile.

Many people live long, full lives with conditions such as Hypertrophic Cardiomyopathy (HCM), Long QT Syndrome, Brugada Syndrome, CPVT, ARVC, and Dilated Cardiomyopathy — particularly when they are well managed. Understanding your specific triggers, adhering to any activity guidance, and taking prescribed medication consistently all make a significant difference.

Key steps if you have an inherited heart condition:

Know your triggers. Some conditions are provoked by exercise; others by sleep, sudden noise, or fever. Ask your cardiologist specifically what yours are.

Ask about treatment options. Medication, an ICD, catheter ablation, or a combination may all be relevant depending on your condition and risk.

Ensure your family is screened. Many inherited cardiac conditions can pass silently through families. First-degree relatives should be assessed even if they have no symptoms.

If you feel your condition is not being adequately monitored, ask your GP for a referral to an inherited cardiac conditions (ICC) clinic.

Category: Cardiac Arrest

CPVT — Catecholaminergic Polymorphic Ventricular Tachycardia — is a rare inherited arrhythmia syndrome in which the heart is structurally normal but specific triggers, particularly physical exertion or emotional stress, can provoke dangerous ventricular arrhythmias. These can cause palpitations, blackouts, or sudden cardiac arrest.

CPVT is caused by mutations affecting calcium regulation within heart muscle cells, most commonly in the RYR2 gene. It typically presents in childhood or adolescence and can cause sudden cardiac arrest in young people who appear otherwise completely healthy. A standard resting ECG may be normal; an exercise stress test often reveals the characteristic bidirectional ventricular tachycardia.

Treatment includes beta-blockers to reduce the risk of arrhythmias triggered by adrenaline, strict avoidance of competitive and high-intensity exercise, and in many cases ICD implantation. Some patients are also treated with flecainide.

Because CPVT is inherited, family screening is essential following a diagnosis. First-degree relatives should be assessed with an exercise stress test as well as a resting ECG and echocardiogram, as the resting ECG may appear entirely normal even in affected individuals.

Category: Implantable Devices