Inherited heart conditions

An inherited heart disease is one which has been passed on through your parents’ genes.

Inherited cardiac conditions (ICC) is an umbrella term covering a wide variety of relatively rare diseases of the heart. They are also referred to as genetic cardiac conditions.

ICCs are caused by a fault - also known as a mutation - in one or more of our genes. If someone has a faulty gene, there’s a 50/50 chance it can be passed on to your children.

The effects of these conditions on you and your family can be enormous. These conditions can - in some cases - become life-threatening. Around 500 young people die every year in the UK as a result of a genetic heart disorder.

These conditions do not always have symptoms, so you can be unaware you have the conditions. Sadly, this can sometimes mean that the first time a family is aware of being affected is after a sudden cardiac death (SCD).

However, great improvements are being made in the detection of ICCs and also how you can live with your condition. There are effective treatments which allow you to lead a normal life.

Family history

It’s very important to draw a medical family tree with an appropriate health professional. This can help to “paint a picture” to see if you have - or have had - any other family members with the same condition. The family tree is sometimes known as a pedigree.

Signs and symptoms

Sometimes people don’t experience many signs and symptoms, but the main symptoms of familial arrhythmia are:

• palpitations
• fainting or blackouts (also known as syncope or "near" faint)

The majority of children and young adults with syncope have a normal heart disease and no major heart rhythm problem.

However, it’s really important to speak to your GP or health professional if you - or a member of your family - have suffered unexplained fainting, especially if it's happened more than once.

Different inherited heart conditions

Familial cardiomyopathies

 These include: 

• Hypertrophic Cardiomyopathy (HCM) 

• idiopathic or familial Dilated Cardiomyopathy (DCM) 

• Arrhythmogenic right ventricular cardiomyopathy (ARVC) 

• restrictive cardiomyopathy

Familial arrhythmias 

 These include:

• Long QT syndrome (LQTS)
• Brugada syndrome
• Catecholaminergic Polymorphic Ventricular Tachycardia (CPVT)
• Short QT Syndrome (SQTS)

Marfan syndrome

Marfan syndrome is an inherited - or genetic - condition that affects the body’s connective tissues. Connective tissues provide support and structure to other tissue and organs.

There is a 50/50 chance that someone with Marfan syndrome will have a child with the condition, but Marfan syndrome is relatively rare - around 1 in 5,000 people have the syndrome.

You can get more information from Marfan Foundation

Sudden Arrhythmic Death Syndrome (SADS)

This is a condition which means there was an unexplained underlying familial heart rhythm that was not detected until there was an investigation following a death.

British Heart Foundation has information on Sudden Arrythmic Death Syndrome and on genetic cardiac conditions and procedure following a sudden death.

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

Read about what to do in an emergency, in case you have a heart emergency.

Treatments

Different conditions require different treatments or interventions, which include:

• changes to your lifestyle
• medication 
• implantable cardioverter defibrillators (ICDs) - see heart surgery 
• heart transplantation (in rare cases) - see heart surgery 

See our section on Treatments

Sport

Sport and physical activity have many benefits. However, vigorous levels of exercise can be dangerous for people with inherited cardiac conditions. Research is, at present, still exploring what level of activity is right for the individual affected by an inherited cardiac condition, especially if they're a young person.

If you want to find out more, speak to your cardiologist. Cardiomyopathy UK has some general advice.

See our Living with a heart condition section for general advice on various aspects of living with a heart condition, like benefits, driving and going on holiday.

Support

Living with an inherited cardiac condition can be distressing for both those with the condition and their families. There is support available through psychological help and genetic counselling.

Genetic services in Scotland are managed by specialist hospital doctors in four regional centres:

• Aberdeen - phone 01224 552120
• Dundee - phone 01382 632330
• Edinburgh - phone 0131 537 1116
• Glasgow - phone 0141 354 9235

These regional services have access to:

• specialist cardiologists
• geneticists
• specialist nursing
• genetic counselling

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

Genetic testing is done for arrhythmias in Aberdeen and for cardiomyopathies in Edinburgh.

You may need to visit your family doctor to obtain a referral to a specialist service.

Network for Inherited Cardiac Conditions Scotland (NICCS)

NICCS is a National Managed Clinical Network (NMCN). It was set up to help coordinate services for people with – or suspected of having – inherited cardiac conditions.

It's part of the NHS and aims to improve services for inherited cardiac conditions (ICCs).

The NICCS brings together experts from across Scotland. 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 cardiac conditions. This includes a patient forum made up of patients, family members and organisations with an interest in ICCs.

If you'd like to get involved in NICCS, visit their website or email nss.niccs@nhs.scot