My Heart Story campaign launches

1st November 2017

We are delighted to have launched our #MyHeartStory campaign today. Our research showed that 71% of people in the UK don't realise that a cause of sudden cardiac death is genetic and 54% are unaware of their family history of heart disease. Worryingly, 22% of people with cardiomyopathy in their family has never had a health check, and 20% of people with a family history of heart disease admit that they have never told their GP about it.

Cardiomyopathy – a disease of the heart muscle – affects more than 160,000 in the UK. Current estimates suggest that 1 in 500 people are affected, but actual prevalence is thought to be much higher. One in three people is initially misdiagnosed with early warning signs of the disease such as breathlessness, palpitations, and dizziness being mistaken for asthma or anxiety.   

Perry Elliott, Chair of Cardiovascular Medicine, University College London and President of Cardiomyopathy UK said, “Cardiomyopathy can increase the risk of sudden cardiac death yet the UK still doesn't have NICE guidelines in place - this means that there has not been any focused effort to agree best practice for this complicated condition and there is a great deal of variation in genetic testing across the UK.

Developing and adhering to specific guidance on cardiomyopathy would save lives and reduce the unnecessary cost of misdiagnosis. We urgently need people across the UK to start talking to family members about their family history of heart disease. It's vital that people inform their GP about their family history so that patients who are at risk can be identified and receive screening”.

Research shows that 87% of people want to know about a history of heart problems so that they can catch symptoms early.

Cardiomyopathy UK's #MyHeartStory campaign encourages families to protect their loved ones by understanding their family history of heart disease and recognising the symptoms to look out for, such as:

  • Breathlessness – indicating a build-up of fluid on the lungs
  • Tiredness – reduced heart function causes fatigue as less energy is delivered to tissues in the body
  • Swollen ankles or tummy – fluid build-up in the tissues can cause oedema
  • Palpitations – caused by arrhythmias
  • Dizziness or fainting – due to reduced oxygen levels
  • Chest pain – caused by restricted blood flow from the heart

Joel Rose, Chief Executive of Cardiomyopathy UK added, “It's essential that families start talking to each other about heart disease within the family. Sudden cardiac deaths can only be prevented if people at risk are identified. We would urge anyone with symptoms of cardiomyopathy or a family history to speak to their GP.

Young people are the biggest losers in the diagnosis lottery as they don’t conform to a ‘typical heart patient’ so they are often misdiagnosed and their cardiomyopathy symptoms are often attributed to something else like asthma. Too many people have died suddenly from this disease. We all need to abandon our preconceptions and stereotypes of what a patient with a heart condition looks like. Family history is a crucial indicator of risk, and we all need to take action and start talking more for this to change”.

If you have any questions about the campaign please email us at