Cystic fibrosis is a serious, inherited condition that can make it hard for children to breathe and for their bodies to digest food.
Every week in the UK, around four people – many of them babies and children – are diagnosed with the condition.
There is no cure for cystic fibrosis. Treatment with medications and physiotherapy eases symptoms but this can be time-consuming and gruelling, sometimes taking as long as four hours per day, which can dramatically decrease children’s quality of life.
Action is funding vital research to help improve the quality of life of babies and children with this condition.
What causes cystic fibrosis?
Cystic fibrosis is caused by a faulty gene that a child inherits from both of their parents - it can't be caught or developed.
One in 25 people are carriers of the cystic fibrosis gene, but for a child to be born with cystic fibrosis they have to inherit two copies of the faulty gene – one from their mother and one from their father. Parents who both carry the faulty gene have a one in four chance of having a baby with cystic fibrosis.
Safer test for cystic fibrosis in pregnancy
Currently tests can’t be done until at least 11 weeks into pregnancy to identify whether a baby has cystic fibrosis, and because the tests are invasive, they slightly increase women’s chances of losing their babies through miscarriage.
We're funding research that aims to develop a new test that just needs a blood sample from the mother. If successful, this test will be suitable for use earlier in pregnancy and should eliminate the risk of miscarriage. By enabling an earlier diagnosis, the tests should also give parents more time to seek out expert advice and plan for the future.
Children with cystic fibrosis are susceptible to chest infections which can be very difficult to treat and around one third will develop a long-term lung infection with Pseudomonas aeruginosa bacteria by their late teens. These infections can cause long-term ill health and reduce life expectancy.
We’re currently funding two potentially life-changing research projects that hope to find new ways to prevent and destroy Pseudomonas infections to help improve the outlook for children with cystic fibrosis.
A history of successes
For 65 years we’ve been saving and changing lives through medical research and have spent over £117m funding some amazing breakthroughs.
Today we fund a broad range of cutting-edge medical research across the UK to tackle premature birth, support children living with disabilities and develop treatments for rare and incurable diseases.