Dr Maya Desai is a respiratory paediatrician at Birmingham Children's Hospital, where she has worked as a consultant for nearly 20 years. She has recently published a research paper, along with the Trust, looking at the characteristics of those who can't benefit from modulator therapies like Kaftrio, which found that a high proportion are from an ethnic minority background. In this blog, Dr Desai sheds more light on this research and what we can do to make sure everyone with CF can access the life-changing treatments they need to live a life unlimited.
Lucy Baxter is the host of the Trust’s new podcast series, CForYourself, as well as hosting her own podcast, From a Lancashire Lass. Here, she explains more about what inspired her to start podcasting, her passion for telling stories, and following in Graham Norton’s footsteps.
October is Black History Month, and over the past few weeks and beyond we’ve been sharing stories to amplify the voices of Black people across the CF community. As an organisation we’re committed to being inclusive and relevant to the diverse ethnic groups affected by cystic fibrosis.
Following years of campaigning by the CF community, 2022 saw Kaftrio approved for 6 to 11 year olds across the UK. More than 1,500 children across the country stand to benefit from this drug, which can limit the damage CF does in those critical early years. Dave, dad to seven-year-old Ayda who has cystic fibrosis (CF), talks to us about the impact that Kaftrio has had on their lives, navigating life with CF, and their hopes for the future.
Shwetha is mum to Vihaan, 5, who has cystic fibrosis (CF). Here she tells us about Vihaan’s diagnosis, life with CF, and how they are celebrating Diwali this year.
