We spoke to Elaina, 24, about growing up with cystic fibrosis (CF), relationships when you have a chronic condition, and the challenges of being friends with people you can never meet.
Coronavirus disease 2019 (COVID-19) which is caused by the virus SARS-CoV-2 has resulted in an ongoing global pandemic. It is unclear whether the relatively low number of reported cases of COVID-19 in people with CF (pwCF) is due to enhanced infection prevention practices or whether pwCF have protective genetic/immune factors. This study aims to prospectively assess the proportion of pwCF, including both adults and children with CF who have evidence of SARS-CoV-2 antibodies over a two-year period. This study will also examine whether pwCF who have antibodies for SARS-CoV-2 have a different clinical presentation and what impact this has on...
Today (9 May 2024) the Lung Research and Innovation Group (LRIG), of which Cystic Fibrosis Trust is a member, have published a ten-step plan to fix lung health by improving respiratory research and innovation.
The aim of this study is to measure the long-term safety, tolerability, and effectiveness of a combination of medicines (VX-121/TEZ/D-IVA) in people 1 year and older with CF. The treatment is made up of three medications: VX-121, tezacaftor and deutivacaftor. Deutivacaftor is a slightly modified version of ivacaftor that is potentially more stable in the body. This means deutivacaftor can be taken once a day instead of twice a day. People participating in the study will receive a single, daily dose of VX-121/TEZ/D-IVA in tablet form. Participants will be asked to visit the CF clinic 11 times over a period...
We are a group of young people aged 14-25 who are living with CF or have a close family connection to someone who is. We are all part of the Trust's Youth Advisory Group (YAG), which is a way for young people to influence work at the Trust and make sure that our voice is heard loud and clear. We chat, share, laugh and cough our way through our monthly online meetings, and get to know amazing people along the way. Here, five YAG members share why we got involved and chat pets, superpowers and weird food!
Dr Anna Elderton is a Senior Clinical Psychologist at the Oxford Children’s Hospital CF Centre. We caught up with her to learn more about her career, her work with CF and her top tips for a successful transition to adult care!