Our 2017 #MyHeartStory campaign

In 2017 Cardiomyopathy UK launched a national campaign to raise awareness of the heart muscle disease. A common misconception is that cardiomyopathy is a rare condition and therefore overlooked in the wider picture of heart failure. 

Currently there is a real problem with misdiagnosis in the UK so getting a quick and accurate diagnosis of cardiomyopathy is vital. We know delays can make the condition worse and increase the likelihood of sudden death. 

In 2015, we surveyed over 750 people with cardiomyopathy and found that one in three were initially treated for something else – typically asthma or anxiety. We found this was  especially true for younger people because they don’t conform to the stereotype of what a 'typical heart problem' patient looks like. This is worrying because we know that cardiomyopathy is the most common cause of sudden unexplained death in children and can affect anyone from  fit and healthy adults to children.

We know there are over 160,000 people living with cardiomyopathy in the UK,  but we believe the reality is many more are living with the condition without knowing it.

Our national campaign aimed to reach:

  • individuals who have the signs and symptoms of cardiomyopathy but are currently being treated for something else;
  • people who are at risk of having cardiomyopathy but do not have any of the symptoms; and
  • the public about the signs and symptoms of cardiomyopathy and in particular the importance of knowing your 'heart story'. This is because many of the symptoms of cardiomyopathy are commonly attributed to other things. But when you add a family history of heart disease they can point towards cardiomyopathy.

Following our survey in 2015, we ran another survey to find out about your experiences and to create a wider movement working for positive change to the lives of people affected by cardiomyopathy.  

Read about what we did, how we did it, and the resources we produced.

See what mumsnet (opens new window) said about our campaign. 

This campaign has been partly funded by an unrestricted
educational grant from Novartis Pharmaceuticals UK