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Some things to consider when you have a Cardiac Inherited Disease

Please note that this is general advice.  Every person is different and requires a special plan just for them.  We encourage you to use this list as a framework to ask your own cardiologist questions.  With new information, guidelines change over time, but our general aim is to help patients lead as normal a life as possible with as much confidence as possible.  Please ask your cardiologist to help you with this goal.

 

How do I look after myself (or an affected family member)?

Take the medication that is prescribed by your doctor:

Doctors have been researching for decades the best way to look after people with cardiac inherited disease.  With some conditions your doctor may prescribe you medication to reduce your risk of dangerous heart rhythms.  If your doctor has prescribed certain medications for you (or an affected family member) it is vital that you continue to take these as prescribed.

 

Avoid certain medications:

Some conditions can get worse with certain medications, so depending on the condition you have, we may ask you to avoid certain medications.  In general, it is best to avoid medications, supplements and herbal remedies which are not necessary.  In some cases, medications are required, and it is important to remind the doctor that some medications should be avoided and that usually there are safer alternatives.  See your specific cardiac inherited disease page for more information.

 

Medic Alert Bracelet

For people who are independent (at school, in the workplace), an event can occur around people who may not know your situation.  A Medic Alert bracelet or necklace (available in a few different fashion/discreet options) can quickly identify your situation to ambulance and hospital personnel.

View their website for further information

 

How do I look after affected family members?

First Aid Courses:  You might like to consider enrolling your family in a first aid course.  In the worst case scenario, knowing how to perform CPR (cardiopulmonary resuscitation) can save a life. You learn lots of other useful first aid skills, and it’s something that should be encouraged more in the community. Please look at the St John’s or Red Cross websites for details.

 

Family members might want to learn more.

Family members may want to know more about your cardiac inherited disease, which may help them to look for the signs and symptoms of the condition in you.  They also may want to know if they also have the same condition.  Often people are anxious and want to know if they are also at risk – but remember some family members are less keen to find out.  Family meetings can help overcome reluctance and anxiety in some families, as they are information sessions where people can ask questions relevant to themselves. Not everyone will want to undergo screening initially; however as they learn more most families are keen to come to a clinic appointment.

If a member of your family is not sure if they would like to have screening, you could perhaps just provide them with the information and contact details for CIDG or your specialist and they can make contact when they feel ready. We can also provide family information sheets that can be emailed or posted to family members to inform them; please ask your co-ordinator for more details.

In the first instance, tests like ECGs, echocardiograms and exercise tests are very useful, don’t hurt and are easily arranged.  Some family members will be able to take advantage of genetic testing too.  Family members are welcome to come and see us in clinic to talk about their options.  Please contact our team via to initiate this process.

For further information you may want to read further information on the conditions, you find these information sheets from TRAGAGY useful.

Long QT Syndrome PDF

Catecholaminergic Polymorphic Ventricular Tachycardia (CPVT) PDF

Hypertrophic Cardiomyopathy (HCM) PDF

Familial Dilated Cardiomyopathy (FDC) PDF

Arrhythmogenic Right Ventricular Cardiomypathy (ARVC) PDF

Gene Testing and Inheritance PDF

Useful Smartphone Apps

St Johns CPR App for iOS, Android and Windows

AED Finder for iOS and Android