More than twice as many people have IPF than we thought

Ruth explains why our new IPF research is so important.

Every day, I support people living with an incurable lung disease called idiopathic pulmonary fibrosis (also known as IPF). So I know just how devastating it can be.

Now we’ve found out that it’s even more devastating than we thought.

Our new research has revealed that there are around 32,500 people living with IPF in the UK - more than double what we used to think.

That’s enough to fill many Premier League football stadiums.

It’s a big shock. And it shows - more than ever - that we need to take urgent action.

We don’t know whether this means more people are getting IPF, or if this is simply more a more accurate picture than we’ve had before.

Previous research has suggested it’s increased 6-fold since the 1970s – so there’s every reason to believe it’s becoming more common.

Donate towards IPF research now

What is IPF?

People with IPF have scarred lungs, which are thick and hard. They find it hard to breathe and, in the words of someone I spoke to recently, they’ll eventually ‘die of suffocation’.

Doctors admitted that even they didn’t know much about IPF.

Joyce, after being diagnosed with IPF

Joyce isn’t alone. I hear stories like hers all the time. People with IPF often speak about feeling ‘lost’.

We need to make sure they can speak to a specialist nurse, who can give them the guidance they need.

We need to make sure people get the right diagnosis first time, and are given treatments that work.

And we need support to be more joined up from GPs, to specialist centres, to palliative care.

These standards are common for people with cancer. Now we know just how many people it affects, there’s no reason why people with IPF should get a lesser standard of care.

Research

Our research also shows that almost 1 in every 100 deaths are from IPF. That’s 15 people every day.

That’s a huge number – and more than better-known conditions like leukaemia, liver cancer and skin cancer.

So why do we spend 50 times more on leukaemia research?

We still don’t know what causes IPF. There’s no cure – and it usually kills in just 3 years.

More research is the only way we can change this.

How do we know this?

We’ve spent 3 years researching the impact of lung disease in the UK.

Collecting and sharing information like this is routine for diseases like cancer. But for lung disease it’s different. Our research is the first of its kind for a whole decade.

Studies like this are expensive and time-consuming. So we need to make sure it makes a difference.

I’m not asking for it to get special treatment. But I want people with IPF to get the support they deserve. The support they’d get if they had a cancer that affects similar numbers of people.

Now we know for sure that IPF is more common than we thought. So we need to give it the priority it needs.

There are no excuses anymore.


Comments

Dear Ruth, It's great to hear there is someone fighting the corner of those suffering from IPF or yet to be diagnosed. My dear father died exactly 10 years ago and I told BLF at the time that it was like watching him suffocate to death. He was put in an induced coma and never regained consciousness. As a family we have raised funds for research (Clive Evans Breath of Life Fund) and we pray for a treatment or even a cure that will help sufferers like him.

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22 April 2016