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Working together we can take the 'idiopathic' out of idiopathic lung disease

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Despite huge progress, we still don’t have a clear understanding of the causes of IPF, as British Lung Foundation Profession Anne-Marie Russell explains

Anne-Marie Russell

I’ve spent the last decade researching interstitial lung diseases (ILDs), but for the last five years my work has focussed in particular on idiopathic pulmonary fibrosis (IPF), a progressive, incurable type of lung disease.  

One of the things that really stands out about my work is the emotional, deeply moving conversations I’ve had with patients and their partners about IPF.

I recall one couple in particular. The wife had been diagnosed with IPF and her husband was very supportive. While they both told me that they were aware of what the diagnosis meant, the husband had clearly not understood the seriousness of his wife’s prognosis and she had wanted to protect him from it.

The look of utter devastation on his face as he gradually began to comprehend this new reality is something that will always stay with me. He later told me this was the first time he had cried in adult life.

“Both he and his wife expressed how grateful they were for the conversation”

Both he and his wife expressed how grateful they were for the conversation with me – it provided them with a way of openly discussing the impact the diagnosis of IPF had on their lives. Now they could talk about how to make the most of what they had for as long as they could.  

I’ve been overwhelmed by the positive attitudes that people living with IPF hold despite receiving such a devastating diagnosis. They want to help in every way they can to make sure that no one in the future has to go through what they’re going through.

“I’ve been overwhelmed by the positive attitudes that people living with IPF hold”

Unfortunately we don’t know a lot about IPF. We have made great strides but we still don’t understand what causes it. We do know that in the UK there are approximately 15,000 people currently living with the disease and more than 5,000 people are diagnosed with IPF every year – and that this number is rising.

We also know that, sadly, that it kills around 5,000 people a year, and that barely half of those diagnosed will still be alive three years later.

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 cure IPF – approved drugs simply slow its progression.

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.

Last week was IPF Week and it’s really important to use opportunities like this to come together and campaign for greater awareness and research. People can see how the awareness week went on Twitter by following the hashtag #ICareAboutIPF.

“Improving the outlook for people with IPF is a big challenge”

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.

Listening to the views and experiences of people with IPF to learn more about their needs during treatment is vital.

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 was supported by the BLF through a travel scholarship to attend the European Respiratory Society conference to present my work and I sit on committees to help influence other nurses.

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. Through my work with the BLF I’ve been able to contribute to the charity’s research strategy.

Changing the outlook for people affected by IPF is not going to be easy but I’m passionate about improving clinical care for patients and supporting other nurses to do so too. By working together in both clinical practice and research we can make sure there is the best possible chance for us to win this fight against a devastating disease.

To find out more about IPF please visit the British Lung Foundation website at www.blf.org.uk

Follow the hashtag #ICareAboutIPF on Twitter to get see how IPF Week went or text ‘IPF’ to 70500 to donate £5 to IPF.

Anne-Marie Russell is a British Lung Foundation (BLF) Professional

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