Joel Rose
Chief Executive, Cardiomyopathy UK
The heart failure community has made great strides in the last few years. Awareness of the condition is increasing, new services established, diagnosis is simpler, research is flourishing and there are more treatment options.
By any standards, things are improving in the heart failure world. This is good news for us, given that there are around 200,000 new diagnoses of the condition in the UK every year. Although things are undoubtedly improving for people with heart failure, there remans a significant challenge.
Heart failure is a description not a diagnosis – it essentially means that a person’s heart is not able to pump blood around their body properly. Sadly, too many people are just given this description, they are simply told that they have heart failure. They receive support and treatment to manage symptoms but without the necessary testing and investigations to ascertain the actual cause of their heart failure.
We want to make sure that cardiomyopathy, a disease of the heart muscle that can affect around 1 in 250 people, is not ‘hidden in heart failure’.
Knowing the cause of heart failure saves lives
This is a significant problem, especially given that some causes of heart failure such as cardiomyopathy can be genetic. Identifying individuals with these conditions gives them access to the specialist treatment they need. Crucially, it can also protect their family members who can be screened so potentially life-threatening issues are picked up earlier and managed.
At Cardiomyopathy UK, we want to make sure that cardiomyopathy, a disease of the heart muscle that can affect around 1 in 250 people, is not “hidden in heart failure”. We want healthcare professionals to recognise the importance of knowing the cause of heart failure, take full family histories and access improved diagnostic testing to give a more accurate and individualised diagnosis. Our clinical education work and dedicated team of volunteer advocates help us to get this message across.
At the same time, it is also important that the everyone knows the signs and symptoms of cardiomyopathy:
- Tiredness
- Dizziness or fainting
- Breathlessness
- Fluid retention or swelling in the legs and tummy
- Palpitations
If there is any history of heart disease or sudden death in your family make sure that your doctor knows.
