Inherited heart conditions
Inherited heart conditions information including causes, symptoms, diagnosis, treatments and prevention.
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Why am I having genetic testing?
You may be having genetic testing because:
- your doctor wants to confirm whether or not you have an IHC
- an immediate family member has been diagnosed with an IHC and your doctor wants to see if you have inherited the same alteration in a gene that could cause the condition.
Some people with an inherited heart condition won’t have any signs or symptoms. Genetic testing can help doctors assess whether you should be monitored or if you should start any treatment.
What conditions can be inherited?
Inherited conditions which can affect your heart, include:
- cardiomyopathies – diseases of the heart muscle
- channelopathies – conditions that can disrupt the electrical functioning of the heart, such as long QT syndrome and Brugada syndrome
- familial hypercholesterolaemia (FH) – an inherited condition which leads to exceptionally high levels of cholesterol.
What happens first?
You’ll usually attend a specialist inherited heart conditions clinic before you have genetic testing. While you’re there, healthcare professionals will talk to you about your medical and family history.
They may carry out some routine tests to check for signs of an IHC. This is called screening. These tests include:
What is genetic testing?
Depending on the results of your screening, you may then be offered genetic testing. This is a DNA test that’s carried out if you’re suspected to have an alteration in a gene which can cause an inherited heart condition. This test may be:
- a blood sample
- a mouth swab, from the inside of your cheek.
You should only have a genetic test after discussing it with a specialist. This is to make sure you’re happy for the test to be done, the right tests take place and the results are interpreted correctly. Your specialist will also be able to support you and answer any questions you have.
The NHS is introducing whole genome sequencing through the NHS Genomic Medicine Service.
Whole genome sequencing looks at all your genetic material at the same time (not just part of it, as with other types of genetic test).
Who can have a genetic test on the NHS?
You’ll usually need to be referred into an inherited cardiac conditions clinic to undergo genetic testing. Your GP or specialist can do this for you. Talk to your GP or hospital specialist about whether testing is relevant for you. If relevant, genetic testing is available free on the NHS.
What support will I have beforehand?
Before the genetic test takes place, you’ll speak to a specialist and may be referred for genetic counselling. This is a chance to ask questions, understand more about the process and decide whether you wish to go ahead with testing. It may involve:
- looking at your family’s medical history and drawing up a family tree
- learning about an inherited condition that runs in your family
- a discussion about genetic tests, including the risks, benefits and limitations
- a discussion about the risk of passing the condition onto any children that you have
- help understanding the results of genetic tests and what they mean
- information about support groups.
What will happen after I get my results?
The results from the test may show:
- you have a change in your genes which is known to cause a health condition
- you do not have a change in your genes which is known to cause a health condition
- it's not clear what the results mean for your health (but doctors may have a better understanding of the results in the future)
Finding a change in your genes doesn’t always mean you’ll get a condition. Similarly, if the gene alteration can’t be found, it doesn’t mean it’s not present. Your doctor will monitor you for signs of the condition. If this happens, you’ll be assessed and your condition managed appropriately.
How long will my results take?
Some tests can take months while others may take a few weeks. This is because some genetic faults can take longer to detect than others. Your healthcare professional will tell you when to expect your results.
What about my family?
If you’ve been diagnosed with an inherited heart condition or if you’re found to have a faulty gene which can cause one your specialist will talk to you about close family members who may benefit from testing. The process of rolling out genetic testing through families is called cascade testing.
Any of your children will have a 50:50 (or 1 in 2) chance of inheriting the same faulty gene that you have. However, this doesn’t necessarily mean they’ll develop the condition.
If you’re an immediate family member
If a close family member has the gene fault or has been diagnosed with an inherited heart condition, you should be referred to a specialist clinic for an assessment and to discuss having genetic testing.
Close family members, or immediate family, are your parents, siblings or children.
If a genetic test shows you don’t have the same gene fault you won’t develop the condition. You also can’t pass it onto your children.
If you have the same faulty gene but don’t have any signs or symptoms of the condition, you’ll be monitored in case you develop it in the future.
Support with genetic testing
It can be very worrying if you think you may have, or develop an inherited heart condition, and there are lots of questions you might have, such as:
- Do I want to be tested?
- How will I tell my family?
- Have I passed it to my children?
- Will it affect my life expectancy?
A genetic counsellor will talk through all these issues and answer any questions you may have once you have been referred for genetic testing. More information about the risks and benefits of genetic testing can be found at geneticalliance.org.uk
Heart Helpline and other support
- Speak to our cardiac nurses by phone, callback, email or online chat on Heart Helpline (Monday to Friday, 9am to 5pm).
- Our Genetic Information Service (GIS) helpline has qualified cardiac nurses who can provide you with information and support on inherited heart conditions.
- Sign up to our Heart Matters magazine for online information packed with health and lifestyle advice.
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