New research from Cardiomyopathy UK shows that 68% of people in Cardiff don’t realise that a cause of sudden cardiac death is genetic and 49% are unaware of their family history of heart disease. Worryingly, 22% of Cardiffians with a family history of heart disease admit that they have never told their GP about it, and 20% with niggling health complaints have avoided telling their doctor because they fear the worst and are burying their head in the sand.
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. Interestingly the people of Cardiff are the most likely to have heard of cardiomyopathy compared to other parts of the UK with 59% of residents having heard of it.
85% of people in Cardiff want to know about a history of heart problems so that they can catch symptoms early.
Bridgend resident, Elis Power, 23, was just three years old when his father died suddenly at the age of 30 from hypertrophic cardiomyopathy – a condition which causes the muscular walls of the heart (ventricles) to become thickened and stiff, making it harder for the heart to contract and pump blood out. Elis said, “Hypertrophic cardiomyopathy is the most common inherited cardiac condition and can affect men, women, and children. Since my dad’s death, all of my dad’s side of the family has been tested and screened regularly. My grandfather, uncle and I have all been diagnosed with the condition thanks to regular screening. I started screening at the age of 4 or 5, but it wasn’t until I was 22 that I was diagnosed with the condition, so regular ongoing testing is essential for all families who have lost a family member from sudden cardiac death”.
Cardiomyopathy UK’s Know Your Heart Story 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, 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”.
