Data from the survey indicates that four of five people in the general public do not know that people with CF often cannot meet one another due to the high risk of infection. Thus, for many with CF, some of the challenges of the COVID-19 pandemic are familiar territory.
“These striking findings demonstrate the lack of awareness of the daily struggles people with CF have to manage and it really shows that CF is still very much an invisible illness,” David Ramsden, chief executive of the Cystic Fibrosis Trust, said on its website.
“In many ways, the adjustments many have had to make because of COVID-19 will give an insight to what everyday life is often like for people with cystic fibrosis,” Ramsden said.
Results also showed that 87% of respondents were unaware of how many people carry a CF-causing mutation — estimated at about one in 25. Also, 76% are not aware that people with CF may have to spend more than 70 days a year in hospital on intravenous antibiotics, and 79% did not know that people with CF commonly need to take more than 40 pills per day.
The survey indicated that younger people tend to be better informed about CF than older individuals, as more people between the ages of 18 and 24 said they knew CF is an inherited genetic condition compared to people 55 and older —62% vs. 53%.
More people in the younger group knew about cross-infection and the dangers it poses — 32% vs. 13% in the group of 55 and older.
“It’s inspiring how those living with CF face challenges head-on with remarkable resilience but living with the condition is anything but easy,” Ramsden said. “Every day they must weigh up risks of catching infections that could damage their lungs and result in lengthy hospital stays, on top of the rigorous daily exercise and treatment regime to stay healthy.”
Macauley Tinston is a 23-year-old living with CF. “Living with CF comes with challenges. But I’ve never let it dictate my life. I’m in control of it, not the other way around and with the right treatment and support, there’s nothing stopping people like me living life to the full or doing anything that people without CF can do,” he said.
These results were revealed during U.K. CF Week, June 15–21.
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