Inherited heart conditions

Inherited heart conditions, sometimes referred to as inherited cardiac conditions (ICC), are a group of heart conditions that are passed on through families. They affect around 1 in 250 people worldwide and can affect people of all ages.

Causes of inherited heart conditions

The body has over 20,000 genes. Genes are made up of DNA and are like instructions for the body.

There are 2 copies of each gene in your body. One is inherited from your mum and one is from your dad. Inherited heart conditions are caused when there’s a change in one or more of your genes. This is known as a gene variant.

If one of your parents has a gene variant, there’s a 50% chance it will be passed on to you (inherited). If you do inherit the gene variant, there’s also a 50% chance you could pass it on to each of your children.

If you do not inherit the gene variant, you can’t pass it on to your children. Most inherited heart conditions follow this pattern.

Each person is affected by each gene variant differently. This means you could have a gene variant and not have any symptoms. But, you can still pass the gene variant on to your children and they may have symptoms.

If someone in your family is diagnosed with an inherited heart condition, or it’s thought they could have one, it’s important to create a family tree with a healthcare professional. This can help to identify if the same condition is present among more than one family member.

If you’re diagnosed with an inherited heart condition, your first-degree family members (parents, siblings and children) should be assessed for the same condition.

Symptoms of inherited heart conditions

An inherited heart condition can cause symptoms like:

  • dizzy spells
  • blackouts, faints or fits (seizures)
  • palpitations
  • breathlessness
  • chest pain

It’s important to speak to your GP or a healthcare professional if you have had any of these symptoms.

An inherited heart condition can also cause cardiac arrest and sudden cardiac death. As some affected people don’t have symptoms, this means that sometimes the first time a family is aware that they’re affected by an inherited heart condition is after a sudden cardiac death.

Types of inherited heart conditions

There are 3 main groups of inherited heart conditions:

Inherited cardiomyopathies

Inherited cardiomyopathies affect the heart muscle. Examples include:

Inherited channelopathies

Inherited channelopathies affect the heart’s electrical system and heart rhythm. Examples include:

Inherited Aortopathies

Aortopathy can affect the aorta, which is the main artery in the body. Examples include:

Sudden Arrhythmic Death Syndrome (SADS)

Sudden Arrhythmic Death Syndrome (SADS) is when someone dies suddenly or unexpectedly with no clear cause.

SADS can occur when there’s an abnormal heart rhythm, known as an arrhythmia. This causes a cardiac arrest where the heart stops beating.

A cardiac arrest is a medical emergency – find out more about what to do in a heart emergency.

The British Heart Foundation has information on genetic cardiac conditions and the procedures after a sudden death.

Cardiac Risk in the Young (CRY) has information on sudden cardiac death.

Testing for inherited heart conditions

The process for testing for inherited heart conditions may differ from person to person. It will also be personalised to you and your family’s needs.

To begin the process, a specialist will ask questions about you and your family history. They may then refer you for heart tests, which can include:

Treatments for inherited heart conditions

Every inherited heart condition is managed and treated differently. Treatments will be based on your symptoms and any test results.

Treatments may include:

  • changes to your lifestyle
  • medication
  • pacemakers or implantable cardioverter defibrillators (ICDs)
  • heart transplantation (in rare cases)

Inherited Cardiac Services Scotland

Genetic services in Scotland are managed by specialist hospital doctors in 4 regional centres. These are:

These regional services have access to:

  • specialist cardiologists
  • geneticists
  • specialist nursing
  • genetic counselling

These cardiac-genetic services link with the other hospitals in their regions.

You may need to visit your GP to get a referral to a specialist service.

Network for Inherited Cardiac Conditions Scotland (NICCS)

The Network for Inherited Cardiac Conditions Scotland (NICCS) is a National Managed Clinical Network (NMCN). It was set up to help coordinate services for people with, or suspected of having, inherited heart conditions.

NICCS is part of the NHS. It brings together experts from across Scotland and aims to improve services for inherited heart conditions. Those in the network include:

  • heart specialists
  • geneticists
  • genetic counsellors
  • pathologists
  • specialist nurses
  • public representatives
  • other experts

The NICCS website has resources for people affected by inherited heart conditions. This includes a patient forum made up of patients, family members and organisations with an interest in inherited heart conditions.

If you’d like to find out more about NICCS, visit their website or email nss.niccs@nhs.scot.

Further information and support

Living with an inherited heart condition can be distressing for those affected and their families. There are many patient organisations and charities that can provide support and further information. This includes:


Last updated:
02 July 2024