Seventy percent of people with cystic fibrosis feel lonely because of their condition

In latest data from Cystic Fibrosis Trust’s Your Life and CF survey, 70% of people with cystic fibrosis (CF) said that in the last 12 months they had felt lonely because of their condition. 

And new YouGov data commissioned by Cystic Fibrosis Trust shows that although 90% of the population have heard of CF, there are a lot of misconceptions about the condition. With 86% unaware that people with CF were advised not to meet face-to-face because of the risk of passing on infections (cross infection) that can cause lasting lung damage and are very difficult to treat.

Fewer than half of those who had heard of CF knew that it was an inherited condition (41%), affecting the whole body (40%). 

Annabelle, 26, who has CF said: “Something like CF is hard enough as it is, but not being able to have close friends going through the same thing makes it even harder. It’s felt like a bit of a cruel joke from the universe that we have the same experiences and struggles, yet the only way we can bond and discuss it is online. It’s very isolating because as much as the people close to me have been around me, they don’t have lived experience and can never relate to it in the same way. I’d say it’s one of the hardest aspects of the disease.”

Mark, 41, who has CF and whose brother died of CF said: “Having a sibling with CF…who I had a natural connection with as a support system was something I took for granted. Face-to-face contact is everything, and we were robbed of some of that, because it takes away that person to lean on who has an understanding no one else can ever have.”

Access to a specialist team of professionals, such as a psychologist, is critical to the care, treatment and life expectancy of people with cystic fibrosis, but like other parts of the NHS, CF services are facing issues with vacancies and recruitment. In October 2024, the vacancy rate in CF centres was higher than the NHS vacancy rate overall at 12.2% versus 7.2%.

Cystic Fibrosis Trust is calling on the governments across the UK to ensure the future of CF specialist care is secured and staffing recruitment and retention in CF teams is addressed. 

The charity also runs a youth programme enabling young people with CF to connect online, a parent peer support service, and a dedicated helpline. 

For information or support with cystic fibrosis, Cystic Fibrosis Trust’s Helpline is available on 0300 373 1000, on email at [email protected] or on WhatsApp 07361 582053

In August 2025, the 70% figure updated from 60% to 70% to reflect further analysis.