When I realised what haemophilia was about, it captured me right away. Since then, this has been a mission of mine – to tell these stories, to show the world what this is all about.
This project began to address a simple misconceived idea: that Europe is a relatively homogenous and high-income place where everyone has good access to health care and patients have rights. That isn’t true. People living in Europe – particularly those who have a rare disease such as haemophilia, and even worst those that have complications in haemophilia – face enormous differences in access to treatment and care depending only on where they live: what country, what part of that country, even what town or city. So we started collecting the stories of people living in big cities and in small towns, in rich countries and in poorer ones. We talked to the older generation of patients but we also talked to children and their families.
What we discovered was beautiful. And moving. And important. And we decided that a small collection of stories was not going to be enough. So we grew the project and made a full-length documentary. And because peoples’ stories breathed life into our project, we wanted the stories and the people behind them to have a web home – a place to visit; a living page. And for this reason we built this website. It houses not only the documentary and the short films, but hopefully it will continue to grow and capture peoples’ stories in other ways. Spotlight new experiences. Bring new perspectives.
‘Life Stories’ is about living with haemophilia in Europe today – and hopefully also tomorrow. It came as a collaboration with the patients, their families and the patient organisations supporting them in their countries. Together with all of them, I invite you to visit these pages, visit the people that share their experiences, and stay in touch with our community of children, parents, adult patients and ageing people with haemophilia – the first generation to have made it into retirement!
Awareness is the key to realising how we can improve society in big and small ways – and understanding peoples’ stories shows us that we are not so different from each other, no matter our particular adversities, and we are not done in Europe with our collective efforts to ensure adequate treatment and care for all.