Inherited heart conditions

Family tree

Inherited heart conditions, also known as genetic heart conditions or inherited cardiac conditions (ICC), are passed on through families.

They can affect people of any age and can be life-threatening.

If left undetected and untreated an inherited heart condition can sadly lead to heart failure or even sudden death from cardiac arrest. For many families, the first sign there’s a problem is when someone dies suddenly with no obvious cause or explanation.

These conditions are different from most congenital heart conditions, although some inherited conditions can cause congenital defects to form, often as part of a syndrome.

According to new estimates, over 600,000 people in the UK are carrying a faulty gene that puts them at high risk of developing coronary heart disease or an inherited heart condition - that’s nearly seven times the capacity of Wembley Stadium.

What causes an inherited heart condition?

Your body is made up of trillions of cells. Each cell has a nucleus, which contains information that makes you unique. This information is your genes. We each have between 20,000 and 25,000 different genes.

Our genes make each of us unique. They affect how we look and how our bodies work. We inherit them from our parents. Inherited heart conditions are caused by a fault (or mutation) in one or more of our genes. If one of your parents has a faulty gene, there’s a 50:50 chance you could inherit it. If you do, then there’s also a 50:50 chance you could pass it on to each of your children.

It’s possible to have a faulty gene that can lead to a heart condition, yet never develop any signs of symptoms of the condition itself. If this happens, you can still pass the faulty gene on and there’s no way of knowing how it may affect your child, even if they do inherit the same faulty gene.

What inherited heart conditions are there?

The most common inherited heart conditions are:

Cardiomyopathies, for example:

Inherited arrhythmias (abnormal heart rhythms), for example:

Very high cholesterol levels:

What are the 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, and 
  • blackouts.

Sadly, for many families, the first sign there’s something wrong is when someone dies suddenly with no obvious cause.  

How is an inherited heart condition diagnosed?

It can be very challenging to diagnose an inherited heart condition, but your doctor or specialist may suspect you have one if:

  • you’ve been diagnosed with angina or had a heart attack at a young age
  • a member of your family has been diagnosed with an inherited heart condition 
  • there’s a history of sudden cardiac arrests or premature deaths in your family
  • a death in the family is unexplained or thought to be caused by a faulty gene.

What happens if a family member is diagnosed with an inherited heart condition?

If someone in your family has been diagnosed with an inherited heart condition, your doctor may suggest that you have tests (known as screening) to check the condition of your heart. You may also have a genetic test to see if you’ve inherited the same faulty gene. This is called cascade testing.  

Why get treated for an inherited heart condition?

The benefits of being tested, and having treatment if you're diagnosed with an inherited heart condition, are: 

  • your risk of getting coronary heart disease and having a heart attack or sudden cardiac arrest is greatly reduced
  • monitoring and treatment can be started quickly
  • close members of your family can be tested and treatment can be started if needed.

Who can I speak to about inherited heart conditions?

Call our Genetic Information Service (GIS) helpline on 0300 456 8383 for more information and support. The helplines are available Mon-Fri, from 09:00 – 17:00 (similar cost to 01 or 02 numbers).

Our GIS has qualified and specially-trained cardiac nurses who can provide you with information about your inherited condition and how it may affect your family. Where appropriate, they can help you get an assessment, via your GP, at a specialist clinic that deals with inherited heart conditions.

Leading the fight against inherited heart conditions

The British Heart Foundation (BHF) is the largest independent funder of cardiovascular research in the UK.

Thanks to our research we now know about many of the faulty genes that cause an inherited heart condition. By finding these genes, BHF researchers can create genetic tests to help find family members also affected by an inherited condition.

But more still needs to be done.

Faulty genes for many conditions remain undiscovered. This means that conditions go untreated and can destroy the lives of thousands of families across the UK. Research is the answer to this devastation and brings hope to those affected by deadly conditions.

Help end the devastation

Want to know more?

We've produced the following booklets for you to download or order, on inherited heart conditions to help you to understand your condition and how it may affect your family: