This rise in calcium can cause arrhythmias - also known as abnormal heart rhythms.
Symptoms of CPVT
The most common symptoms of CPVT are blackouts, palpitations and dizziness. These can be brought on by strenuous physical activity and heightened emotions, which can cause an increase in the amount of adrenaline running through your blood.
If you are with someone when they collapse suddenly, it is imperative to call 999 and try to perform cardio-pulmonary resuscitation (CPR) until an ambulance or medical help arrives. If you are untrained in CPR, the 999 operator will be able to talk you through the process.
How is CPVT diagnosed?
If you experience symptoms, your doctor will refer you to a specialist who will do an exercise test. This is an ECG that records your heart’s electrical rhythm whilst you are exercising. Any abnormal rhythms will show up on the ECG.
You will need to discuss the level of activity that is safe for you with your doctor. It’s very important that families affected by IHRDs receive an accurate assessment, diagnosis, treatment and support from specialists in a clinic for inherited heart conditions.
Genetic testing can also be done if someone in your family has already been diagnosed with CPVT even if you don’t have symptoms of the condition.
What treatment is available?
The treatments for CPVT are medication and ICD depending on the case.
Your doctor may prescribe a beta-blocker (a type of medicine) to help slow down your heart rate and help to prevent life-threatening arrhythmias, and restrict the amount of physical activity you do. Roughly 1 in 3 people also need to be fitted with an Implantable Cardioverter Defibrillator (ICD). If this is the case you will have to refrain from contact sports and it could affect the type of work you do, particularly if you work with magnetic or power tools.
Shannon was diagnosed with CPVT. Since then, she's been actively involved with the British Heart Foundation's young people's programmes. The British Heart Foundation supports young people through its programme [email protected], and the Yheart Facebook page.
See how Shannon has learned to live with CPVT.
If you have further questions about inherited heart conditions, our Genetic Information Service can help you. Call 0300 456 8383. Lines are open from 9am to 5pm Monday to Friday (charged at a rate similar to 01 or 02 calls).
Our scientists are helping to beat heartbreak
Our research funding has already helped scientists find a faulty gene that causes CPVT.
This research was only possible through generous donations from the public. Your donations help us fund hundreds of top scientists all over the UK, working on more than a thousand different research projects, but there is still lots of work to do in the effort to beat heartbreak forever.
Want to find out more?
Inherited heart rhythm disturbances booklet
This booklet explains what an inherited heart rhythm disturbance means. It covers screening, testing and implications for the family and future generations.
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