Inherited heart conditions

Causes of inherited heart conditions 

Your body is made up of trillions of cells. Each cell has a nucleus, containing information that makes you unique. This information is called your genes. 

Genes affect how we look and how our bodies work. We inherit them from our parents. Inherited heart conditions are caused by a change in one or more of our genes. If one of your parents has a change in their gene, there’s a 50:50 chance you could have it too. If you do, then there’s also a 50:50 chance you could pass it on to your children.

It’s possible to have a changed gene that can lead to a heart condition, but you may never develop any signs or symptoms of the condition itself. If this happens, you can still pass the gene onto your child and there’s no way of knowing how it may affect them.

Congenital heart disease and inherited heart disease are both conditions you are born with, but they can be very different. Our animation explains the most common congenital and inherited conditions.

Symptoms of an inherited heart condition

Some people with an inherited heart condition have no symptoms, while other people develop symptoms such as:

• dizzy spells 
• palpitations
• blackouts
• shortness of breath
• chest pain, which can be a sign of various heart conditions, including some inherited ones.

You should speak to your GP if you have any of these symptoms.

For many families, the first sign there’s something wrong is when someone dies suddenly, with no obvious cause.  This is known as sudden arrhythmic death syndrome (SADS).

Different types of inherited heart condition

The most common inherited heart conditions are cardiomyopathies and channelopathies.

Inherited cardiomyopathies:

• hypertrophic cardiomyopathy 
• dilated cardiomyopathy 
• arrhythmogenic right ventricular cardiomyopathy (ACM).

Channelopathies (which can cause abnormal heart rhythms):

• long QT syndrome (LQTS)
• brugada syndrome 
• catecholaminergic polymorphic ventricular tachycardia (CPVT) 
• progressive cardiac conduction defect (PCCD).

Other inherited conditions which increase your risk of heart disease:

• familial hypercholesterolaemia (FH) – very high cholesterol levels. 

Testing for an inherited heart condition 

There are a few reasons why your healthcare professional may want to test for an inherited heart condition. This might be because:

• a member of your family has an inherited heart condition 
• there’s a history of cardiac arrests or premature deaths in your family
• a death in the family is hard to explain or thought to be caused by a faulty gene
• you’ve been diagnosed with angina or had a heart attack at a young age, in which case your doctor may suspect you have FH.
  

If someone in your family has been diagnosed with an inherited heart condition, your doctor may suggest that you have tests. These can include:

• An electrocardiogram (ECG)
• an echocardiogram (echo)
• a 24hour heart monitor
• an exercise tolerance test
• an MRI.

The tests are done to look at the heart's structure, the heart’s electrical circuit and sometimes its blood supply. These are physical heart tests or sometimes called screening tests. The tests you have may be different depending on the condition it’s thought you might have. 

Speak with your healthcare professional if you have any questions about the tests you’re having.

When a family member is diagnosed with an inherited heart condition

If you’re a relative of someone who has been diagnosed with an inherited heart condition (IHC), it’s recommended that you’re referred to a specialist centre. Here you may be tested to see if you have the same change in your genes as your family member, which could lead to an inherited heart condition.

This type of genetic testing through families is called cascade testing. 

Genetic testing typically involves taking a blood sample or cheek swab and sending this sample off to a specialist lab to check for genetic changes that may point to an inherited heart condition

Genetic counselling

If you're offered a genetic test, you might also be seen by a genetic counsellor. They can explain:

• the pros and cons of testing
• what your results could mean
• how it might affect your relatives
• the chances of passing on a condition to your children
• your options if you want to avoid passing on an inherited condition

They can also connect you with support groups for extra help.

Treatment for an inherited heart condition

Different inherited heart conditions need different treatments and your doctor or specialist will explain what’s right for your condition. Treatments can be worrying at first but they usually work well for inherited heart conditions. 

Treatment options for an IHC can include:

• changes to your lifestyle like eating healthier or changing how active you are
• medication 
• implantable cardioverter defibrillators (ICDs).

For more information, visit our treatments section.

Heart Helpline an other support

• Call the Genetic Information Service (GIS) helpline between Monday to Friday, 9am – 5pm (similar cost to 01 or 02 numbers). If needed, they can help you get an assessment, via your GP, at a specialist clinic.
• Speak to others with heart conditions by joining a support group or online community.
• Sign up to our Heart Matters magazine and online information packed with health and lifestyle advice.

NHS Health Check

• If you’re aged 40-74 and live in England you can get a free NHS health check which looks at your risk of developing heart and circulatory diseases.
• If you live in Northern Ireland, Scotland or Wales, please ask your GP about similar health checks in your area.

 These health checks do not usually pick up an inherited heart condition however they may pick up an elevated cholesterol which can indicate Familial hypercholesterolemia.