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.
The Trust is continuing to work with the Government to monitor the situation closely and make sure a long-term resolution is achieved and everyone with CF is able to access the pancreatic enzymes they need.
Last month, our Senior Impact Adviser, Belinda, joined an in-person progress meeting in Sheffield, for researchers working within a Strategic Research Centre collaboration co-funded by the Trust and Cystic Fibrosis Foundation in the United States. The aim of the research programme is to investigate whether a new type of Magnetic Resonance Imaging (MRI) could be used to track changes in lung health over time.
Tomorrow afternoon as thousands across the UK are settling down to watch Strictly Come Dancing on the TV, Dr Gwyneth Davies from UCL Great Ormond Street Institute of Child Health will be preparing to present some early data from CF STORM, a much anticipated research study, at the North America CF Conference (NACFC). Here we reflect on why she and co-chief investigator Prof Kevin Southern wanted to run this study and who has been involved so far.
To mark Rare Disease Day, we’re introducing Emily’s Entourage, a US-based nonprofit organisation that aims to speed-up lifesaving research and drug development for people with cystic fibrosis (CF) who do not benefit from current modulators.
In this blog, Joe Smale from our Policy team highlights how we’re keeping pressure on the Government and manufacturers to address and reduce the impact of Creon shortages.
Most 80th birthdays are unlikely to be celebrated 10,000 feet in the air, but that’s exactly how Shelagh, 79, will be marking hers, when she takes on a skydive to raise money for Cystic Fibrosis Trust.
