This article is more than 1 year old
Introducing our new resource for navigating a new diagnosis, ‘Cystic fibrosis diagnosis and your baby: a guide for families’
We understand that a diagnosis of CF can be very difficult and often unexpected for many families. It might feel overwhelming to have the information shared with you so early on in your child’s life, and there’s going to be lots of questions. Most parents will find out their child has CF shortly after birth, after the routine heel prick test. If there is no history of CF in your family, the news can come as a shock.
Our new resource, ‘Cystic fibrosis diagnosis and your baby: a guide for families’ has been produced with families with lived experience and CF clinicians who have all generously shared their time, stories and experiences. The pack gives an overview and some information to support families through the early days following diagnosis.
The resource provides a gentle introduction to cystic fibrosis, answers common questions, offers top tips and shares what support is available for families, as well as the child.
We’re delighted to share our new guide for families to support them navigating a new diagnosis, which we know can be overwhelming. This pack will often be the first thing parents will read after they’ve received a new diagnosis, so it was vital to us that we worked with families with lived experience and CF clinicians. The pack is intended to be there as and when families need it, as their baby grows. We’ll be with families every step of the way through their CF journey.
Alison Taylor, Information Manager at the Trust
Parents and carers will be physically given the guide after receiving their child’s diagnosis by their CF team. It is available to view on our website and copies can be ordered directly through our Helpline. You also sign up to our email journey which offers further information and support through your baby’s first year.
Download the full pack: Cystic fibrosis diagnosis and your baby – A guide for families
Cystic fibrosis (CF) is a genetic condition which causes sticky mucus to build up in the lungs and digestive system. It affects more than 11,000 people in the UK. One in 25 of us carries the faulty gene that causes it, usually without knowing.
Since 1964, we've supported people with cystic fibrosis to live longer, healthier lives – and we won’t stop until everyone can live without limits imposed by CF.
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.
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.