About 1 in every 250 people is affected by genetic heart muscle diseases, collectively called cardiomyopathy. Approximately 260,000 people in the UK, and 1.5 million in the US, are affected; many are unaware that they may be at risk.
People with cardiomyopathy often live shorter, impaired lives, and develop symptoms that interfere with daily living. They are at high risk of:
- dangerous heart rhythms
- heart failure.
Most people with cardiomyopathy also say that their condition seriously affects their mental wellbeing, and that of their loved ones.
The genetic nature of the condition means that some families lose multiple family members due to sudden death or heart failure, sometimes even in childhood. Family members also have to deal with feelings of guilt about passing on a life-limiting disease to their children, or struggle with decisions about starting a family.
Current treatments are life-long and expensive, and can cause serious side effects, as well as often not working very well. Implantable defibrillators can prevent sudden cardiac death, but they do not improve symptoms or protect from heart failure, the major cause of death in patients.
With rapid advances in genetic testing, the number of known genetically affected individuals is growing; however, diagnosis without effective treatment is not enough.
We must, and can, do better.
We want to be able to offer this generation of cardiomyopathy patients a cure.
We are one of the four finalists for the British Heart Foundation's Big Beat Challenge.