We need to work together for IPF

Anne-Marie explains the importance of fighting IPF as a community.

When I was a lecturer in university an opportunity came up to work on a funded research project in interstitial lung disease (ILD). My background had been mainly in primary care and family health so this was a new and exciting opportunity.

Working with people diagnosed with ILD and their families was a deeply moving experience – their commitment to help with research was notable. I was overwhelmed by the positive attitudes that people with IPF held in the adverse circumstances of receiving such a devastating diagnosis.

I’ve spent the last decade researching interstitial lung diseases, with the last four years of my work focussing on idiopathic pulmonary fibrosis (IPF). It really is a privilege to work with patients diagnosed with IPF and their families.

During IPF Week it’s really important to come together and campaign for greater awareness and research.

Unfortunately we don’t know a lot about IPF.

We don’t fully understand what causes it, or why everybody has different experiences. We do know that around 5,000 people are diagnosed with IPF every year in the UK – and that this number is increasing.

We also know that sadly, about half of people will only live for around three years after their diagnosis. People with IPF can feel breathless from simple everyday activities like walking and they often feel tired and develop a bad cough.

There are currently no treatments that can completely cure IPF. There’s a therapy available which can slow down the progression of the condition - but this can have difficult side effects.

Working together

Improving the outlook for people with IPF is a big challenge. That’s why it’s so important for us to work together to help people to get more out of life and to live longer. Scientists need to continue to work as a community to understand what causes the condition and how it progresses in different people.

Working together I hope that we will be able to take the 'idiopathic' (which means unknown) out of IPF within the next decade. Until we get to that point we need to find ways to encourage people to manage their condition as much as possible and to give them access to excellent care when they need it.

It’s vital we make sure that people affected by IPF understand how they can get involved in our work, and to give them the chance to share their stories. By listening to their voices, we can learn so much more about this condition and make changes to IPF care that really improves their wellbeing.

Staying positive

My work involves exactly that - listening to the views and experiences of people with IPF to learn more about their needs during treatment. By speaking to so many different people with IPF, I’ve discovered that everyone has their own way of looking at the condition.

We need to consider this when we talk about what IPF means for them and what their future might hold.

The things we discuss and the treatments we choose should be tailored to each person, depending on what they want to know and what they are most comfortable with. We need to help them feel positive and empowered about managing their condition so they can have a better quality of life and better treatment outcomes.

As a member of the British Lung Foundation’s IPF advisory group, I get the chance to pass on those experiences to help shape the information and support people with IPF receive. I’ve also contributed to the BLF’s research strategy.

It‘s important to work with charities, people who have IPF, their families, physicians, nurses, GPs and palliative care teams to identify what matters most to them and how to create the most effective IPF research programmes.

Changing the outlook for people affected by IPF is not going to be easy. But by working together we can make sure there is the best possible chance for us to win this fight against a devastating disease.

This week is World IPF Week. Can you do your bit by donating to our IPF Week appeal?