Inherited heart conditions

The human body has more than 20,000 genes. Genes are made of DNA, and you can think of them as instruction codes that tell the body how to work.

You carry 2 copies of every gene. One copy comes from your mother and the other from your father. An inherited heart condition happens when there is a change in one or more of these genes. Doctors call this a gene variant.

If one of your parents carries a gene variant, there is a 50% chance it will pass on to you. If you do inherit that gene variant, there is also a 50% chance you will pass it on to each of your own children.

If you do not inherit the gene variant, you cannot pass it on to your children either. Most inherited heart conditions follow this same pattern of passing from parent to child.

Not everyone is affected by a gene variant in the same way. You could carry a gene variant and never notice any symptoms yourself. Even so, you can still pass it on to your children, and they may go on to develop symptoms even though you did not.

If someone in your family is diagnosed with an inherited heart condition, or the doctor suspects one, it is worth sitting down with a healthcare professional to map out a family tree. This helps show whether the same condition is present in more than one family member.

If you are diagnosed with an inherited heart condition, your first-degree relatives, meaning your parents, siblings and children, should also be checked for the same condition.

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:

• Aberdeen – gram.clinicalgenetics@nhs.scot
• Dundee – tay.clinicalgenetics@nhs.scot
• Edinburgh – wgh.clinicalgenetics@nhslothian.scot.nhs.uk
• Glasgow – ggc.wosicc@ggc.scot.nhs.uk

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:

• Cardiac Risk in the Young (CRY)
• British Heart Foundation
• Cardiomyopathy UK
• Life After Cardiac Arrest
• SADS UK
• Arrhythmia Alliance UK
• Cruse Scotland Bereavement Support
• Sudden Cardiac Arrest UK (SCA UK)

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