Guiding families through genetic heart risk
Inherited Cardiac Conditions are genetic heart disorders that can quietly run through families. Often there are no warning signs, yet these conditions can increase the risk of dangerous heart rhythm problems and, in rare cases, Sudden Arrhythmic Death Syndrome (SADS).
At Poppy’s Light Foundation, we believe knowledge is protection. By helping families understand these conditions and encouraging early screening, we aim to prevent tragedies and ensure children and young people get the care they need.
What are Inherited Cardiac Conditions?
Inherited Cardiac Conditions (ICC) are a group of genetic heart disorders passed down through families, affecting approximately 1 in 250 people globally. They can impact individuals of all ages.
The three main types are:
- Cardiomyopathies, which are diseases of the heart muscle such as Hypertrophic Cardiomyopathy (HCM) or Dilated Cardiomyopathy (DCM).
- Channelopathies, which affect the heart’s electrical system, like Long QT Syndrome (LQTS) or Brugada Syndrome.
- Aortopathies that affect the aorta, the body’s main blood vessel, such as Marfan Syndrome.
These conditions are typically passed down in an autosomal dominant pattern, meaning only one parent needs to carry the gene alteration for it to be passed to a child.
Long QT Syndrome (LQTS)
Long QT Syndrome is a condition where the heart takes longer than usual to ‘reset’ between beats. This delay can sometimes trigger sudden, abnormal rhythms.
What parents should know:
- Fainting or seizure-like episodes can be a sign.
- Events may happen during exercise, sleep, or sudden stress.
- With the right diagnosis and treatment, children can live safely and confidently.
Brugada Syndrome
Brugada Syndrome affects the heart’s electrical system and can lead to irregular rhythms, often during rest or sleep.
What parents should know:
- Many people have no symptoms at all.
- Fevers are a significant trigger and need careful management.
- Early recognition allows families to put simple, protective steps in place.
Catecholaminergic Polymorphic Ventricular Tachycardia (CPVT)
CPVT is a rare rhythm condition that is brought on by adrenaline, such as running, excitement, stress, or strong emotions. This is the condition that affected Poppy, and it’s one we speak about with deep care and commitment.
What parents should know:
- Symptoms may include sudden dizziness, fainting, or collapse during activity.
- It’s highly treatable once identified.
- Families benefit greatly from specialist guidance and a clear safety plan.
Inherited Cardiomyopathies
These conditions affect the structure of the heart muscle, making it thicker, weaker, or stiffer than usual. The most common type, Hypertrophic Cardiomyopathy (HCM), causes the heart muscle to become overly thick.
What parents should know:
- May cause breathlessness, chest pain, or fainting.
- The condition can increase the risk of abnormal rhythms.
- With careful monitoring, most young people live full and active lives.
How do I know if I have an Inherited Cardiac Condition?
Healthcare professionals will thoroughly discuss your medical and family history to look for patterns. This is followed by screening, which involves routine, non-invasive tests to check for signs of an ICC. These tests typically include:
- A physical examination
- Blood tests
- An Electrocardiogram (ECG), which records the heart’s electrical activity.
- An Echocardiogram, which uses sound waves to create a moving picture of your heart.
Genetic testing may be used to confirm a diagnosis or to see if you have inherited the same gene alteration as an immediate family member. Testing is crucial because many people with an ICC have no obvious signs or symptoms. Some families may not realise a heart defect or an inherited cardiac condition is present until screening is carried out.
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