When the author Helen Stevenson was told her firstborn daughter had cystic fibrosis she couldn’t bring herself to write any more. It felt like a distraction from tending and nurturing her baby. Now Helen has channelled her experiences into the beautiful memoir ‘Love like Salt’, a story about mothers, daughters, music and illness.
Analysis of UK CF Registry data found that people with cystic fibrosis (CF) taking ivacaftor (brand name Kalydeco) appear to have fewer lung infections than people who are not on the drug. This is the biggest registry-based-study of the effects of ivacaftor on lung infections so far. In the future, this could lead to a reduction in the daily medications people with CF have to take.
Waiting for the lab to confirm which bugs you’re growing can take days, and this delay can mean vital treatments aren’t started as quickly as they should be. To combat this, the Cystic Fibrosis Trust is co-funding two research studies to develop ways to speed up bug detection tests, funded through our Venture and Innovation Awards.
Ruth Keogh, Senior Lecturer in Medical Statistics at London School of Hygiene and Tropical Medicine, answers our questions about her current research into using statistical methods with patient data to answer questions about survival in people with cystic fibrosis. Find out more about how she tackles this challenging subject, and how you can help with her research.
Following announcements by NHS England and the European Medicines Agency (EMA) on access to Kaftrio, the first triple combination therapy for the treatment of cystic fibrosis (CF), Dr Keith Brownlee, Director of Policy, Programmes and Support explores the next steps, what this means for access in the UK, and how you can support our campaign for access to medicines.
