CFTruths Campaign Highlights Challenges of Daily Living

Patricia Inácio, PhD avatar

by Patricia Inácio, PhD |

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CFTruths | Cystic Fibrosis News Today | U.K. Cystic Fibrosis Trust | illustration of woman with megaphone

The U.K. Cystic Fibrosis Trust has launched the CFTruths campaign, which is designed to enhance public awareness and understanding of cystic fibrosis (CF) and how patients routinely take precautions that now are associated mainly with preventing COVID-19.

CFTruths comes on the heels of a YouGov poll organized by the Trust, which showed that 86% of people are unaware of the challenges of living with a CF diagnosis, including the need to refrain from in-person meetings with other patients due to the risk of contracting a serious infection.

“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 [United Kingdom] 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,” David Ramsden, chief executive of the CF Trust, said in press release.

“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,” Ramsden added.

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Caitlin Rich, a former graduate at Ogilvy Health with CF, designed the campaign after realizing how the COVID-19 pandemic, and the ensuing  lockdown that altered people’s lives, reminded her of “normal” everyday life.

“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,” said Rich.

CF is characterized by the buildup of thick mucus in various organs, including the lungs, intestines, pancreas, and liver. The mucus not only clogs up the airways and makes it harder for patients to breathe, but its buildup in the lungs also increases the risk of infections.

Most CF patients develop complications from infections that put them at risk of worsening lung disease, particularly when infections are driven by antibiotic-resistant bacterial strains, a cause of concern as they are linked with rapid lung function decline and lower survival among patients.

The lockdown associated with the pandemic gave a glimpse to ordinary people of what it is like to live with CF, as the campaign highlights how patients “always had to social distance” and were “coughing before it went viral.”

As COVID-19 restrictions are being eased, the campaign hopes to increase awareness of CF and enhance the support being offered to patents.

“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,” said Rich.

The idea for the campaign followed Caitlin’s regular consultations with her nurse, who called her to check that she 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?,” said Rich. “We laughed it off, but unfortunately most people don’t find my cough as amusing.”

Cough is a hallmark symptom of CF.

The aim of CFTruths “is to educate,” she added, “but I also personally felt empowered to own this conversation around my condition.”