Your diagnosis questions, answered
A new diagnosis of cystic fibrosis (CF) brings lots of questions. Here, we’ve gathered some of the questions we see most often – through our Helpline, social media and online community forum – and provided some answers.
-
Q: Is my baby at risk of infection from the environment?
The infection risk posed by the environment is often a concern for parents. There are certain environments, such as mud, stagnant water, rotting vegetation and hay that harbour bacteria and fungi that can be harmful to children with CF. This means that parents will need to think more carefully about their child’s exposure to these risks and what they feel comfortable with, ideally with input from the CF team. This is a very personal process which can change over time and will depend on many things.
Unfortunately, it isn’t possible to say what the exact risks for each activity are. Washing hands and equipment will always be important and other adjustments can be made to minimise the risk.
We spent a lot of time weighing up avoidance of infection risk against quality of life. The CF team provided information that helped us make decisions that were right for us as a family, without judgement. We chose to avoid activities the team had highlighted as ‘high risk’ but other than that, to enjoy being active together. There are no right answers, but being able to make informed decisions with guidance from the team really helped.
– Tim*, whose son Alex* has CF
-
Q: Can we have pets?
A: Usually, so long as good hygiene is maintained. This might include keeping your pets clean, washing hands after touching pets, and not letting pets lick faces or sleep on your child’s bed. If you have smaller animals, you might restrict your child from cleaning out cages or changing pet bedding. Your CF team will be able to advise you.
-
Q: Can we travel?
A: Yes! There are things you can do to make travelling with a child with CF easier. Being organised is key. Your CF team will be able to advise you on any things you need to consider or take with you. Travel insurance is essential – our Helpline can give guidance on finding insurance providers.
-
Q: Can we go to baby groups?
A: Yes – baby groups can be an excellent way for your baby to socialise and learn about the world, and for parents and carers to meet each other. Make sure you let the group leader know that your baby has CF in case there is another baby with CF in the group. Be mindful of which activities you’re happy for your baby to be exposed to and make sure you’re minimising risk by washing yours and your baby’s hands, using antibacterial wipes or hand gels and not sharing equipment or toys with other babies.
We went to a baby group and they wanted to do playing with sand, but I suggested that that wasn't very good for Arlo to play with sand that might be dirty. So they used porridge oats instead that acted as sand for the beach play.
– Nicole, whose son Arlo has CF
-
Q: We would like to have more children – will they have cystic fibrosis?
A: If you and your partner are thinking about another pregnancy, you'll be able to access support from a genetic counsellor before you get pregnant. They can help you to understand more about your genetics and the options you may have. You can be referred to a genetics counsellor by your GP and CF team.
Some parents choose to explore IVF for any subsequent pregnancies – for example, PGD (pre-implantation genetic diagnosis) is performed as part of an IVF cycle to see if the embryo has CF. Our Helpline can provide information about genetic testing.
-
Q: Will my child be able to have children of their own?
A: The number of people with CF who are having children is increasing every year. Although most men and some women with CF will experience some fertility issues, many people with CF are able to have children, and your child will have family planning options to explore if they make the decision that they would like to have a family in future.
-
Q: What kind of research is being done into CF?
A: Cystic Fibrosis Trust is the largest funder of cystic fibrosis research in the UK. There’s a huge amount of research underway – both to better understand the condition, treat the symptoms and develop treatments to improve both health and wellbeing. We also run a clinical trials programme to speed up development of clinical trials and opportunities to take part.
-
Q: How can I help Cystic Fibrosis Trust?
A: There are so many ways you can get involved with our work, like fundraising, sharing your experiences of CF as part of our involvement group, or adding your voice to our campaigns.
You’re bound to have questions not answered here. Your CF team is a great starting point for any questions you may have.
You can also browse our information resources where you can find out about all aspects of cystic fibrosis. You can also contact our Helpline, or start a discussion over on our online community forum.
Don’t forget – it's important to contact a health professional if you have a question about your child’s health, care or treatment. Our information is a guide but doesn’t replace advice from your child’s CF team.
You might also be interested in
Travel and CF
If you or your child have cystic fibrosis, taking a holiday can require a lot of planning.
Support with a new diagnosis
We understand that a diagnosis of cystic fibrosis (CF) can be very difficult, and there's a lot for you and your family to think about. We are here to help.
CF Connect
Get in touch with a trained parent volunteer who you can talk to in confidence about having a child with cystic fibrosis.
Here to help
If you’re struggling with any aspect of cystic fibrosis, we’re here to help. Contact our Helpline for support, a listening ear or just someone to talk to.
Published July 2024
Next review date: July 2027