While everyone's experience of CPVT is different, if you are in the midst of a CPVT episode, your heart may be beating at more than 200 beats per minute. This is incredibly fast and severely limits your heart’s ability to pump blood around your body.

As with many genetic heart conditions, extreme physical exercise is not recommended if you have CPVT. But that doesn’t mean you can’t exercise at all. The key is to choose exercise that does not excessively raise your heart rate and blood pressure, and flood your system with adrenaline. So, rather than competitive sports or intensive activities, you may need to choose lower-impact exercises. These will still give you the benefits of exercise, just without triggering your CPVT.

Additionally, if lightheadedness, dizziness or fainting are typical of your experience, some exercises may also need to be avoided to limit risk to yourself. For instance, swimming, horseback riding or cycling are activities where loss of consciousness can lead to injury or death.

Some lifestyle changes will need to occur to help you manage your CPVT. This includes avoiding competitive exercise or sports, as well as limiting caffeine. You may also need to take medications to reduce the effect of adrenaline on your heart and help maintain that slower heart rate. Additionally, regular check-ins and monitoring of your condition by your healthcare team will be required to ensure treatment is working as it should.

Overall though, these changes can become part of normal life for you minimising the effect CPVT has on you.

Because CPVT is caused by a genetic mutation, there is no cure. However, early intervention and treatment, along with consistent and appropriate management of the condition can help reduce the risk of arrhythmia and complications. This is why getting diagnosed as soon as possible is so important.