Receiving a diagnosis of Cystic Fibrosis can be a worrying time, whether you’ve just had a baby, or you are an adult experiencing a late diagnosis. We hope the information below is helpful. if you need free and confidential support after a diagnosis, please contact us.
Not all that long ago, children with CF who did not have bowel blockages as newborns were not usually diagnosed until problems such as poor growth or recurrent chest infections had developed. Nowadays treatment can start earlier as Cystic Fibrosis is one of the conditions screened for in the UK as part of the heel-prick blood spot that all babies in Scotland are offered on day 4 or 5 of life. The heel-prick test does not make the diagnosis of CF, but if the test is positive it flags up that CF is a possibility that needs to be further investigated. This can be a complex area. Your CF team will be able to explain to you what further tests are recommended for your baby and will explain to you what the results mean.
This can be a worrying and stressful time for parents and families. Your CF team will support you and your family; but sometimes talking to someone who is neither a family member nor a CF professional, yet has experience in CF, can be helpful. The Butterfly Trust offers a comprehensive support service, including emotional support. All our services are free and completely confidential. Please contact us.
- Clinical Physiologist
- Respiratory Physiologist
- Lab staff
- Other specialists consulted if needed
**The information on this page was written by Dr Andrew Fall with contributions from the Butterfly Trust. It is not intended to be either detailed or comprehensive and can never replace discussions with experts in the condition. There are many aspects of the condition not covered here. To learn more, please ask your CF team for further information.