Your body is made up of trillions of cells. Inside each cell are genes, which contain the instructions that help determine how your body grows, develops, and functions. These genes are inherited from your parents and make you unique.
ICCs occur when there is a change (mutation) in one or more genes.
If one of your parents carries a gene mutation:
• There may be up to a 50% chance you could inherit it.
• If inherited, there may be up to a 50% chance of passing it to your children.
Some people carry a gene mutation linked to a heart condition but never develop symptoms. Even without symptoms, the gene change can still be passed on, and its effects may differ between family members.
Types of ICCs:
Some individuals have no symptoms. Others may experience:
You should speak to your GP or family doctor if you have any of these symptoms.
For some 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).
The two most common types of ICCS are cardiomyopathies and channelopathies.
Inherited cardiomyopathies
Cardiomyopathies are a group of ICCs that affect the heart muscle. Over time, the heart’s chambers may stiffen, enlarge or thicken. These changes can affect how well the heart pumps blood around the body and may lead to the symptoms described above.
These conditions are caused by changes (mutations) in one or more genes that guide how the muscles in your heart grow and function. Common examples of inherited cardiomyopathies include:-
• Hypertrophic Cardiomyopathy (HCM)
• Dilated Cardiomyopathy (DCM)
• Arrhythmogenic Ventricular Left/Right Cardiomyopathy (AVC – may be referred to as ALVC/ARVC)
Inherited channelopathies (which can cause abnormal heart rhythms)
Cardiac channelopathies are ICCs that affect the heart’s electrical system. These are caused by changes (mutations) in the genes that control ion channels. Ion channels are tiny structures in heart muscle cells that allow charged particles such as sodium, potassium, and calcium to move in and out of the cells.
These charged particles help generate the electrical signals that keep your heartbeat steady and regular.
When ion channels do not work properly, the heart’s electrical activity can become unstable, which may lead to abnormal heart rhythms (arrhythmias). In most cases, the heart’s muscles and its coronary vessels remain normal. Common examples of these conditions include:-
Other inherited conditions which increase your risk of heart disease
Your doctor may recommend testing if:
If screening is advised, tests may include:
The tests are done to look at the heart's structure, the heart’s electrical circuit and sometimes its blood supply. The tests you have may be different depending on the condition you might have.
Speak with your healthcare professional if you have any questions about the tests you are having.
If you are a relative of someone who has been diagnosed with an ICC, it is recommended that you are referred to a specialist centre. Here, you may be offered tests to check if you carry the same genetic change as your family member, which may indicate an inherited cardiac condition.
This type of genetic testing within families is known as cascade testing.
Genetic testing usually involves taking a blood sample or cheek swab and sending this sample off to a specialist laboratory to check for genetic changes that may be linked to an inherited cardiac condition.
Genetic counselling
If you are offered a genetic test, you may also meet with a genetic counsellor. They can help you understand:
• the benefits and limitations of testing
• what your test results may mean
• how the results could affect your relatives
• the likelihood of passing the condition to your children
• your options if you wish to reduce the risk of passing on an inherited condition
They can also provide resources or connect you with support groups for additional guidance.
Treatment options varies depending on the specific type of ICC. Your doctor or specialist will guide you.
The options may include:
Although treament may feel overwhelmingly intiatially, it is often highly effective.
Many people with an Inherited Cardiac Condition continue to live full and active lives. When symptoms do occur, they are often well managed with appropriate treatment. It is important to let your doctor know if your symptoms change or worsen.
Below are some aspects of daily life to consider.
Work
Most people with an ICC can continue working. However, jobs involving heavy physical labour or strenuous activity may need to be reviewed. Speak with your healthcare professional about the type of work you do so that they can advise you appropriately.
Staying Active
You can usually participate in most everyday activities. However, high-intensity exercise and competitive sports may not be suitable for some individuals. It is best to discuss any exercise plans with your doctor, who can recommend what is safe for you.
Driving
Most individuals can continue driving a private vehicle. There may be restrictions for commercial driving roles such as taxis, lorries, buses, or heavy goods vehicles. As requirements vary by condition, your doctor can guide you on any specific restrictions.
Sex
It is natural to have concerns about sexual activity. In general, sex is as safe as other forms of moderate physical exertion. Speak with your healthcare professional to understand your limits and recommend what is safe for you.
Healthy Living
Adopting a healthy lifestyle can help manage symptoms and reduce the risk of additional health problems. This includes eating well, maintaining a healthy weight, staying physically active within safe limits, and avoiding smoking.
