As patient-led charities, everything we do at the Council is driven by those affected by heart valve disease, and their lived experience empowers our work, strengthens our voice and ensures that patients are influencing valve disease care.
COVID-19 presented our Patient Council with a huge challenge, as restrictions were placed on what we could do, while simultaneously impacting valve disease patients in a way that meant they needed us more than ever. Despite the pressures of COVID-19, our work never stopped, and we have been able to achieve an incredible amount since the outbreak began. The celebrated #JustGo campaign marked our united response. The message was simple: If you’re experiencing severe symptoms of heart valve disease or a heart attack, now is not the time to ‘stay home’; when your heart says so, just go.
We now move towards Heart Valve Disease Awareness Week and our focus shifts towards #ListenToYourHeart and encouraging older people to ask their doctor for a stethoscope check, the first step in diagnosing heart valve disease.
It’s estimated that across the globe over 30 million people live with heart valve disease. This isn’t a disease we can ignore. Unfortunately, heart valve disease isn’t well understood or well known by the general public. The Heart Valve Disease Awareness Week will highlight the fact that heart valve disease is a common, serious, but a treatable condition.
Leaving heart valve disease undiagnosed and untreated can lead to heart failure and death. It means increased stress on our health care systems with more hospital admissions for major heart issues that could have been avoided. Yet, early diagnosis and treatment can relieve this pressure and, of course, to lengthen life and allow those with valve disease to play an active role within their communities; we call this the Power of Positive Ageing.
Our first and most important step is to raise the profile and awareness of heart valve disease. The activity planned during the week will help us achieve that. It will also lead more people onto the correct treatment pathways for the best possible outcomes. Over the coming weeks, I will be talking about the specific activity across our partner charities and I can’t wait for September 14th.
Chair of the Heart Valve Disease Patient Council
The awareness week is led by members of the Heart Valve Disease Patient Council, including;
- AEPOVAC, Spain
- Alliance du Cœur, France
- Croí, the heart and stroke charity, Ireland
- Cuore Italia, Italy
- Heart Valve Voice, Canada
- Heart Valve Voice, Japan
- Heart Valve Voice, UK
- Initiative Herzklappe, Germany
- Instituto Lado A Lado Pela Vida, Brazil
- Meine Herzklappe, Austria
- PACO, Mexico
- Street Doctor, Netherlands