IPF: how we're making a difference

Ruth explains how we're making a difference for people living with idiopathic pulmonary fibrosis (IPF).

Around 15,000 people in the UK are currently living with idiopathic pulmonary fibrosis (IPF). Every year, 5,000 more will be diagnosed with this condition.

More people die each year from IPF than from better known diseases such as ovarian cancer, kidney cancer and leukaemia. Yet most of the public has never heard of this devastating condition.

IPF information and advice

I’m always being told by people with IPF that they do not get enough information when they are first diagnosed. Sometimes their first reaction is ‘thank goodness it isn’t cancer’. Then they find out about the impact that IPF will have on their life.

Information about IPF, the treatments available and the latest research isn’t always easy to find. That’s why we’ve developed the first ever comprehensive IPF information pack. This pack contains a wide selection of materials to help people understand their condition better and to guide them towards further trusted help and support.

Treatments and research

Sadly, there is still no cure for IPF, but there has been huge progress made towards better treatments in the last year. To make sure people have the most accurate and reliable information about these advancements, we asked a specialist researcher to write an overview on the most current findings and knowledge about IPF treatments.

What the latest findings mean for you

Finally, we have also produced a short online surgery video with one of the UK’s leading consultants on IPF. This video explains what the recent findings on IPF treatments presented at the American Thoracic Society conference in San Diego mean for people with the condition.

You can find all of these resources on our new IPF webpages, which also contain useful information about the condition and personal stories from those who have experienced living with the condition.

Working together

Together we are going to fight for more research for IPF; for a future where people living with the condition have lots of effective treatment options and choices. We are campaigning to make sure that more people are aware of IPF and that everyone affected has high quality information, care and support when they need it.

Help us win the fight against IPF: make a donation today to help us campaign for more research and awareness.


Comments

Thanks Joyce for letting us know how much it means to you. We want people to be able to go away from their diagnosis with useful information and also for reliable, comprehensive information. I'd love to hear from everyone who uses the pack - you can give us your feedback at http://www.blf.org.uk/Page/IPF-information-feedback
Thank you so much for putting together the IPF information pack. When I was first diagnosed two years ago, I was given a photocopy of a typed (not even printed) A4 sheet for information and told to go and 'Google' for further information. I left the hospital feeling like I'd been handed a time bomb, I didn't know what to do or where to go for help. It's incredible how things are changing and seemingly quite fast too.

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11 July 2014