We need your help in shaping the future of research, care and support for everyone affected by cystic fibrosis. What should Cystic Fibrosis Trust focus on and work towards over the coming years to help achieve a life unlimited?
This week (3–9 November), we'll be shining a spotlight on some of the additional symptoms and complications that can come with living with cystic fibrosis, from gut symptoms to diabetes – showing CF is ‘not just the lungs’.
Cystic fibrosis (CF) is the most common fatal inherited condition in Caucasians, causing recurrent chest infections and premature death due to lung failure. When patients develop chest infections their symptoms usually slowly worsen over the course of several days to weeks. Due to this gradual onset, patients often seek medical attention several days or weeks after symptoms start to worsen. We believe that if we were able to monitor patients more closely we could diagnose and treat chest infections earlier and consequently improve health outcomes. The HOME-CF study aims to investigate whether home monitoring is beneficial for adults with CF...
This week (3–9 November), we'll be shining a spotlight on CF and the additional diseases and complications that can come with it, from gut symptoms to diabetes – showing CF is not just the lungs.
This week we’re shining a spotlight on some of the symptoms and complications of CF outside of the lungs. Here we share the experiences of Margot, 21, who tells us about how distal intestinal obstruction syndrome (DIOS) impacts her life, how she navigates the unpredictability of life with CF, and the importance of raising awareness of how CF affects the whole body – not just the respiratory system.
We know that gastrointestinal (GI) symptoms can be a daily challenge for people with cystic fibrosis – and can often be difficult to talk about. In fact, relief of GI symptoms was the third most important research priority identified through the Trust’s James Lind Alliance priority setting partnership. We delve into what they are, the research that’s looking for answers, and how we’re working to increase understanding of these symptoms.
We are incredibly privileged to be supported by volunteers and fundraisers here at Cystic Fibrosis Trust; people who give their time, passion and energy not for recognition, but because our cause means so much to them. For Chris Lilliman, volunteering for Cystic Fibrosis Trust has been more than a commitment – it’s been a tribute and a journey of remembrance and hope.
