IPF kills 5,000 every year – but you’ve never heard of it

Ruth is determined to make a difference for people with this rare lung disease.

We don’t know what causes IPF. It kills around 5,000 people every year and there’s no cure. Around 32,500 people across the UK have it and approximately 7,800 people are diagnosed with it each year.

Half of all people diagnosed with IPF die within 3 years. 

People with IPF (which stands for idiopathic pulmonary fibrosis) have scarred lungs, which are thick and hard. This makes it hard to breathe.

You and I might take breathing for granted, but people with IPF tell me that they feel out of breath all the time. Eventually, they will 'die of suffocation'.

Falling off a cliff

Knowing this must be so difficult. Yet I am in awe at the strength people show in the face of such adversity.

One incredible man called David said, “My condition worsened, like falling off a cliff. I know that I am a dying man. But not yet matey – try again next week.”

And Ron has even managed to take on a triathlon. He had to walk instead of run, struggled in the water, and a lack of oxygen forced him to end his bike ride early. But he was determined to finish and is a huge inspiration.

When Joyce found out she had IPF, nobody could tell her what it meant.

“Doctors admitted that even they didn’t know much about IPF. It’s like being hit by lightning and so life-changing that I find it difficult to recognise who I am”.

We’ll never give up

Ruth blows bubbles for IPF awarenessWe’re working really hard to make sure more is done to help fight this terrible disease.

We’ve put together loads of free information, run regular support groups across the country and special events where people can learn about IPF from the experts.

We’re making sure IPF is a priority for politicians by launching our special report in parliament and setting out our plan for what government needs to do.

And our research will help find new treatments and cures, and stop people getting IPF in the first place.

We’re making great progress, but there’s still a long way to go. We will never give up.

How you can show your support this IPF week

 

 


Comments

I have IP and being looked after by doctors at the royal brompton in south Kensington who have been fantastic as have all the staff and people involved
Sorry to hear about your mum Annie and Pip, my mum died 9 months ago very suddenly, IPF was only confirmed after she was admitted to hospital 3 days before she died. It is very hard to come to terms with. I have decided to run the Edinburgh Marathon next year to raise funds for BLF. It will be a challenge but every day living with IPF is a challenge. Hopefully more people will join me xx
Great Blog Ruth emence work raising the profile of IPF well done Geraldine
Great Blog Ruth emence work raising the profile of IPF well done Geraldine
This horrible disease killed our lovely mum on sunday after a very short period of time. Her life was taken when she should have had many years in front of her. She absolutely insisted that the donations from her funeral should go to research into IPF. Rest in peace mum lots of love xx
I have had IPF for 6 months Looks like you only way to go is lung transplants

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5 October 2015