The Trust’s new campaign sheds light on life with cystic fibrosis, and its similarities to living with COVID-19

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Our new campaign, CFTruths, is launching today to help increase the public’s understanding of cystic fibrosis.

Our new campaign, CFTruths, launched today to help increase the public’s understanding of cystic fibrosis. This comes from a new YouGov poll that we recently carried out, which showed that 86% of people do not know that people with CF cannot meet in person, due to the risk of passing on potentially deadly infections to each other. 

The campaign was devised by Caitlin Rich, a former graduate at Ogilvy health who has cystic fibrosis and was struck by how life under lockdown for her was very similar to the precautions she takes normally in her everyday life.

“The idea sparked from a conversation with my CF nurse, who called me before a hospital visit to check that I didn’t have COVID-19. After the first question: Do you have a persistent cough? there was a pause... I’ve known this nurse for nearly a decade, and have had a cough the whole time due to my CF. Of course! What do you think I’m coming in for? We laughed it off, but unfortunately most people don’t find my cough as amusing. Thus, ‘we were coughing before it went viral’ came to be. The aim is to educate, but I also personally felt empowered to own this conversation around my condition.”

Caitlin Rich

Caitlin recalls, “I quickly realised that we could draw on many more parallels between living in the pandemic and living with cystic fibrosis:, social distancing from others with CF, fear of catching a dangerous infection, restrictions on socialising and travelling… it has always been difficult to get people to understand what it is like to live with CF, but this campaign might help by relating it to our universal experience of the pandemic. Of course, both COVID-19 and CF are much more than what is captured in the snappy headlines – but when you delve deeper, we’re really comparing one serious, life-limiting disease to another serious, life-limiting disease.”

Lockdown gave people an insight into what living with cystic fibrosis is like, because of the challenges of keeping apart from loved ones when the 2m rule was implemented. Our new campaign therefore highlights that people with CF have “always had to social distance” from one another, and were “coughing before it went viral”. With COVID-19 restrictions coming to an end, we are hoping that by more people becoming aware of the condition, people with CF can be better supported.

“Today we’re launching our CFTruths campaign to give an insight into what it’s really like to live with a long-term, life limiting condition. COVID-19 has made the last two years a time of challenge and loss across the UK and some of the changes we all had to make have given an insight into what parts of everyday life are often like for people with cystic fibrosis, these memories may fade as most of us begin to return to life as normal. We want to remind people that those with CF will still, every day, weigh up the risks of catching infections that could damage their lungs and lead to lengthy hospital stays.

David Ramsden, Chief Executive of the Trust

“These stark findings also show the lack of public awareness of cystic fibrosis and are a reminder that it is still very much an invisible illness. People with CF can look very well on the outside, but what their friends and colleagues don’t see is the amount of medication they need and the hours of rigorous physiotherapy they do before they get to school or work to help them stay healthy. This all impacts on their mental wellbeing and ability to work.” 

Mark's story on his life with CF

Mark Blois tells us about his story with CF, and his 25-year career as a lawyer 

Fiona's story

Fiona’s daughter Zara was diagnosed with cystic fibrosis at just 18 days old.

Caitlin

Find out more about our #CFTruths campaign

What are your #CFTruths?

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