“Chloe was diagnosed at 16 days old through the newborn screening programme. I knew how serious CF was as my cousin has the condition, but I didn’t really know the ins and outs of it until I had Chloe.”
Parents who know that they carry the CF gene may choose to undertake antenatal testing to see if their child is affected by the condition - this can help parents to seek out expert advice and plan for the future. However, the current test is invasive and can present a risk to the unborn baby. We’re funding research led by Professor Lyn Chitty into creating a non-invasive test. This research is being match funded by Action Medical Research and Great Ormond Street Hospital.
Genes, genotypes, mutations and classes… the world of CF genetics can be an intimidating place, especially if your baby has just been diagnosed with the condition. Take a look at our brand new genetics page to find out more about these terms and what they might mean to someone with cystic fibrosis. Or why not take a look at our new parent pack and film, featuring Michelle herself!
“When I sit down and really think about what we have to do to keep Chloe healthy, it’s surprising just how much time it takes. Not just her treatments, but her swimming and dance lessons, sorting out her prescriptions and planning when she eats so that she has her Creon at the right times. I’ve got another young child, and it can be difficult trying to juggle the attention that both children need.”
Taking care of a young child can be challenging enough, and we know that fitting in vital exercise is time-consuming to say the least. Check out Nuffield Health’s programme of free personal training for children with CF and their carers, a partnership with the Cystic Fibrosis Trust.
“I wish I had more hours in the day and a second pair of hands, but being organised, regimented and open-minded all helps me to save time. Asking for help when I need it gives me a bit more freedom – even if I’m just asking someone to collect the prescriptions or take Chloe to swimming so I can spend some time with Elliot.”
Ever felt like you needed support, or even just a sympathetic ear? Take a look at our CF Connect peer support service, where we put parents and other family members and friends in touch with trained parent volunteers who understand and can offer advice and support in confidence.
Worth every minute
“I hope for a cure for Chloe and the rest of the CF community, of course. But in the meantime, all I can hope for is that all this time and effort we are putting into Chloe’s health works and keeps her as healthy as the day she was born.”
Contracting infections can be a huge worry for parents with children with cystic fibrosis. Research suggests that some current methods of treating Staphylococcus aureus (S. aureus) in children with CF could lead to the same children being infected with Pseudomonas aeruginosa earlier, which is why we’re funding CF START, a study to find the safest and most effective way of treating children to stop them developing dangerous bugs. With £50,000 of Trust funding and over £1.4 million from the National Institute for Health Research, Professor Kevin Southern and his team are comparing different methods of treating S.aureus to see which will treat children more successfully. Find out more about the study!
Take a look at the results from our 2018 CF Insight Survey to see what people with CF said when asked about the one thing that would improve their lives.
Life after transplant, having CF in the workplace, juggling treatments and socialising. Whatever it is that interests you, we've got loads for you to explore this CF Week! Head to our home page, where you can choose between Michelle, Chloe, Amy and Dom and get their unique perspective on time and CF, and find out what we're doing to give time back.