As we release the 2021 CF Registry Report, Gwyneth Davies (paediatrician, researcher, and member of the CF Registry Steering Committee) explores some of the key findings and what they mean for the CF community.
Leading lung charity cautions that “with winter already the deadliest season for people with lung conditions, there could be a tidal wave of hospital admissions”
This month saw the launch of our first ever Cystic Fibrosis Exercise Practitioner Fellowship. The 12-month fellowship has been awarded to Lucia Diego-Vicente, who will be based in the CF team at the Royal Victoria Infirmary in Newcastle upon Tyne.
This study is looking to explore if exercise is an effective and safe method of airway clearance for people with CF. It is a feasibility trial and will help gain the insights required in order to plan a large full-scale trial. Researchers at Edinburgh and Portsmouth Universities have worked with the CF community to investigate which exercise (type, duration and intensity) should be performed for airway clearance, and are now hoping to recruit people with CF and their families to a study asking them to stop chest physiotherapy and replace with exercise for airway clearance instead. In addition, the researchers...
There can be the misconception that CF is a condition that only affects white people, but figures from our recent Registry Report reveal about 6% of the UK’s cystic fibrosis population are from a Black, Asian or minority ethnic background. Throughout Black History Month and beyond, we’ll be sharing stories from the Black CF community about their experiences and how it feels to be a minority within a minority group. Here, Cydney tells us about the racism she has faced in the workplace and how it has affected her as someone with cystic fibrosis. A big thank you to Cydney for sharing her story.
Melissa is mum to Thèadora, 9, and lives in Wales. Thèadora was diagnosed with CF as a baby. Here, Melissa tells us about the family’s CF journey and the financial burden it can bring.
Poppy lives in Wales with her sausage dog Willie. Poppy is an artist and a former winner of our Helen Barrett Bright Ideas Award. She received a double lung transplant in 2015 – and says it has “completely changed her life”. To mark Organ Donation Week, we’re sharing a poem Poppy has written about her transplant experience.