CForYourself: Pregnancy and CF

11/14/24 • 52 min

CForYourself: A podcast from Cystic Fibrosis Trust

As access to new treatments increases across the community, we have seen real progress for people with cystic fibrosis. For many, lives are getting longer and healthier and this means new doors are opening.

One area which has seen significant change, is the number of people with CF becoming parents. The latest UK CF Registry data revealed 116 women had babies in 2023. More than double the number from 2020.

Earlier this year, Cystic Fibrosis Trust announced the exciting news that we will be funding a new research project examining the impact of pregnancy, childbirth, and breastfeeding for those with CF. Researchers will also work with the Trust to develop new guidance on women's health throughout their lives.

This Strategic Research Centre, or SRC for short, will be led by Dr Imogen Felton and Professor Jane Davies of Royal Brompton Hospital and Imperial College in London.
Our host, Lucy, is joined for a virtual tea and chat by Dr Imogen Felton to chat all about this topic, along with Obstetric Physician Dr Rebecca Scott, who works in the CF maternal health service at Chelsea and Westminster Hospital and the Brompton, and Laura Visick, who has CF and recently became a mum to a little boy called Lucas.
Read the full transcript.

For more information and support on any of the issues we've talked about in this podcast, you can call our Helpline on 0300 373 1000, or email [email protected], or message us on WhatsApp
You can find lots more information in the Trust’s Starting a Family booklet.
Find out more about how CF affects the reproductive system and fertility of men and women, and the different fertility treatments available.
Genetic testing is a complicated topic. If you have any questions please discuss it with your GP, or CF team if you have access to one. Our factsheet on carrier testing also goes into more detail.
Home-Start UK and Cystic Fibrosis Trust are working together to support the growing number of people with cystic fibrosis becoming parents who find themselves balancing their extensive CF treatment burden with care for their newborn. The pilot is taking place across Glasgow.
Find out more about the MATRIARCH SRC.
Being told that you can’t have the family you wanted, for whatever reason, can be devastating. Your CF team may be able to provide emotional support or direct you to other sources of support.
We also recognise that for those who don't benefit from Kaftrio, the journey to becoming a parent might not be straightforward. Get in touch with our Helpline with any questions.

For more information and support on any of the issues we've talked about in this podcast, you can call our Helpline on 0300 373 1000, or email [email protected], or message us on WhatsApp
You can find lots more information in the Trust’s Starting a Family booklet.
Find out more about how CF affects the reproductive system and fertility of men and women, and the different fertility treatments available.
Genetic testing is a complicated topic. If you have any questions please discuss it with your GP, or CF team if you have access to one. Our factsheet on carrier testing also goes into more detail.
Home-Start UK and Cystic Fibrosis Trust are working together to support the growing number of people with cystic fibrosis becoming parents who find themselves balancing their extensive CF treatment burden with care for their newborn. The pilot is taking place across Glasgow.
Find out more about the MATRIARCH SRC.
Being told that you can’t have the family you wanted, for whatever reason, can be devastating. Your CF team may be able to provide emotional support or direct you to other sources of support.
We also recognise that for those who don't benefit from Kaftrio, the journey to becoming a parent might not be straightforward. Get in touch with our Helpline with any questions.

Previous Episode

CForYourself: Talking transplant

Everyone going through the transplant process will have a different experience and journey. Adjusting to life after an organ transplant can bring new opportunities, but also new challenges. This can be complex to navigate, both practically and emotionally.
To mark Organ Donation Week, our host, Lucy, has a virtual tea and a chat with Zanib Nasim, to talk about her experience of having a transplant. In an emotional and honest conversation, they cover adjusting to life post transplant, Zanib’s hopes for the future and what the experience has taught her.
Zanib is a member of the Trust’s involvement group, so you'll also hear about how she uses her voice to influence the work of Cystic Fibrosis Trust. Plus, Louise Hodge, Involvement Coordinator at the Trust, explains how by joining the group, your experiences and expertise can inform future clinical care, research and the work of the Trust.
Read the full transcript.

For more information and support on any of the issues we've talked about in this podcast, you can call our Helpline on 0300 373 1000, or email [email protected], or message us on WhatsApp
Find out more about cystic fibrosis and double lung transplant, liver transplant and other organ transplants. You can also find our transplant information resources for adults and children with CF, and their friends and family, to help them understand what it might mean for their loved one.
Read our information on adjusting to life after transplant.
Join our involvement group to share your experiences and influence the work of the Trust, researchers, and clinicians. Email [email protected] for more information.
Find out more about Organ Donation Week.

Next Episode

CForYourself: Navigating a new diagnosis

In this episode we're talking all about navigating a new cystic fibrosis (CF) diagnosis.
Our host Lucy sits down for a virtual tea and chat with Jade, whose 8-year-old daughter Penelope was diagnosed with CF at two days old. Jade, who recently featured in our new parent pack, talks about some of the emotions she felt when they received the diagnosis, her advice for other parents, and how she explains CF to Penelope.
Lucy also catches up with my own mum, Jill, to talk about her work as a volunteer for our CF Connect peer support service for parents of children and young people with CF.
Read the full transcript.

For more information and support on any of the issues we've talked about in this podcast, you can call our Helpline on 0300 373 1000, or email [email protected], or message us on WhatsApp.
If your baby has just been diagnosed with CF, you might not know where to start. We've pulled together lots of information to help make things easier. Download our guide for families.
Speak to a trained volunteer who also has a child with CF through our CF Connect peer support service.
We recognise that for those with children who don't benefit from Kaftrio, the new diagnosis journey can feel very different. Please get in touch with our Helpline with any questions you might have.