84 per cent of the public unaware those with cystic fibrosis can't meet in person - CF Week poll finds
While during the pandemic it became the norm for many people to meet online, this has always been the reality for people with cystic fibrosis who want to connect with each other. In addition, 83% were unaware that 1 in 25 people in the UK carry the gene mutation that causes cystic fibrosis.
This new data is released today (Monday 13 June) to launch Cystic Fibrosis Trust’s annual awareness week, which this year will show a range of people with CF who continue to live full lives despite the limitations of their condition. Cystic Fibrosis Trust Ambassador’s Jenny Agutter and Richard Madeley are joining forces with actor Cameron Hutchinson, along with Sarah Kay who has cystic fibrosis, to raise awareness of the condition.
CF Week runs from 13th – 19th June this year, with Wear Yellow Day on Friday 17th June - when, people are encouraged raise money for the Cystic Fibrosis Trust in whatever way they like – as long as it is yellow!
Cystic fibrosis is a life-long and life-limiting, genetic condition affecting over 10,800 people in the UK. It causes a build-up of sticky mucus on the lungs and also impacts on other organs of the body – making activities such as walking, sleeping, and eating a daily challenge. There has been incredible progress in the care and treatment of the condition, but the most recent data still shows that, tragically, half of those people who die from cystic fibrosis each year are 36 years old or younger.
Cystic fibrosis can be a very lonely disease and places so many limitations on people’s lives. We want every person with cystic fibrosis to live a long and full life and this CF week, we’ll shine a spotlight on the barriers people living with CF face – such as the financial burden of a lifelong condition, difficulties getting a job, as well as the physical and emotional challenges that isolation can bring.David Ramsden, Chief Executive of Cystic Fibrosis Trust
While newer drugs are now available, they don’t work for everyone, have come too late for others and are not a cure.
To find new treatments we’re funding cutting edge research to tackle the underlying cause of cystic fibrosis to understand and treat harmful lung infections and other aspects of CF like cystic fibrosis related diabetes and gut issues.
Awareness for CF is more important now than ever. In these unusual times post pandemic the whole world has a new appreciation for being restricted and not able to do the things we normally could. As someone with CF, dealing with those challenges is the norm and we should be celebrated for all the things we can achieve rather than those we can’t. Being more accepting of illness, whether mental or physical, needs to become par for the course, especially in workplaces. We all matter!Sarah, from Crewe, aged 36, who has cystic fibrosis
To help raise vital funds for the Cystic Fibrosis Trust by whatever you do, do it in Yellow on Friday 17 June, 2022 and text 70500 to donate. YELLOW5 for £5, YELLOW10 for £10, or YELLOW20 for £20.