CForYourself: A podcast from Cystic Fibrosis Trust

CF week 2023 is all about celebrating the incredible progress we’ve already made in CF research, and looking forward to the breakthroughs we can make in the future.

In this extra special episode, our host, Lucy, chats with two guests, researcher Alice Collins and her brother Alexander, who has CF, about their work, life and childhood.

We also hear from Dr Paula Sommer, Director of Research and Healthcare Data at the Trust, about the importance of funding our research here at Cystic Fibrosis Trust.

It's thanks to our incredible supporters that we can continue to be at the cutting edge of CF research. Making breakthroughs and discoveries that change lives for the better. Now and in the future. But we know this is just the start. Incredible progress has been made, but there is still a long way to go until everyone with CF can truly live a life unlimited.

Donate today and help us unite for a life unlimited.

Read the full episode transcript on our website.

• 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].
• Find lots more information about the research we fund at the Trust.
• Visit our Clinical Trials Hub to find out more about clinical trials and how you can get involved. You can also take a look at our very own Trials Tracker: a CF clinical trials database to help you find suitable clinical trial opportunities.
• We fund research to tackle some of the most pressing issues in CF today. Find out how your donations are making a difference.
• Read our factsheet on Kaftrio - complex and individual experiences. It contains information for people with CF and their families, whether they are taking Kaftrio or not. It includes information about dealing with mixed emotions, managing changes, the reactions of family and friends, and other possible impacts of Kaftrio.

The podcast is also available on Spotify and Apple Podcasts.

Advances in our understanding of CF mean that there are many more effective treatments out there, so people with the condition are living longer than ever.

But the aging process can also bring its own challenges and issues to contend with. As well as physical concerns as your condition changes over time, there can be emotional, social and financial impacts to think about too. Whether that’s planning for a family, the burden of care, or concerns about how you can provide financially for your loved-ones. We’re going to be discussing all this and more in today’s episode of CForYourself.
Lucy enjoys a virtual cuppa and a chat with Tim Wotton about his experience of growing older with CF, including celebrating his 50th birthday, the breakthroughs he’s seen in his lifetime, and celebrating every breath. In this episode’s ask the expert segment, we focus on money matters and the financial impact of growing older with CF, something that we know is a deep concern for many people at the moment, with the rises in costs of living. Nicky, who is Welfare Officer at the Trust, shares some top tips for how you can plan financially for a future that you might not have previously envisaged.
This episode deals with some issues that listeners may find upsetting, including life expectancy, miscarriage, bereavement and mental health. If you have questions about any of the topics raised in this episode, we're here for you. You can call our Helpline on 0300 373 1000, or email [email protected].The views and experiences shared in this episode are individual to Tim and Lucy and may not reflect the experiences of the CF community.

• Growing older with CF - Find out more about growing older with cystic fibrosis, and access relevant support and information.
• Work and CF - Information on work and CF, including details of organisations that can provide support with discrimination.
• Financial support - We provide a range of grants for people with cystic fibrosis and their families, support for those applying for benefits and information about prescription charges.
• CF Forum - Join the conversation on our Forum and connect with other people with CF.
• A guide for adults with cystic fibrosis and their partners - Find out more about the considerations involved when deciding whether or not you'd like to start a family if you or your partner have cystic fibrosis.
• Miscarriage support - Tommy’s midwives can be contacted on 0800 014 7800 (Monday to Friday, 9am to 5pm), or email [email protected]
• 'How have I cheated death?' - Tim Wotton CF memoir
• Postcards from Earth - Tim Wotton's blog

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.

In this special bonus episode of CForYourself, we are celebrating the start of our FeBrewary fundraising campaign.

We know this can be a miserable time of year for many people: Christmas has been and gone, the weather’s cold, and spring still seems so far away.

FeBrewary is a chance to brighten those gloomy days. Here at the Trust, we are encouraging the community to come together with friends and family during February– in person or online, host a tea party, and make your cuppa count.

To get in the spirit, Lucy is having a brew and catch up with the lovely Charlotte Bones. Charlotte is a supporter of the Trust and has raised vital funds over the years. Charlotte recently spoke movingly at our Carols by Candlelight service about her life with CF and how doctors advised her that, at age 27, she should prepare for the worst. She also talked about her experiences of the COVID-19 pandemic and a period of poor health, which left her in continuous pain.

“CF has never, and will never, get the better of me," Charlotte told the audience, and since starting Kaftrio, Charlotte's health has improved greatly.
In this episode, Lucy and Charlotte chat about a range of topics, including mental health, cross infection and Kaftrio. We also hear from Nicola, who works in our community fundraising team, about how listeners can get involved in FeBrewary 2023.
This episode deals with some issues that listeners may find upsetting, including life expectancy, mental health and Kaftrio. If you have questions about any of the topics raised in this episode, we're here for you. You can call our Helpline on 0300 373 1000, or email [email protected].The views and experiences shared in this episode are individual to Charlotte and Lucy and may not reflect the experiences of the CF community.

• Growing older with CF - Find out more about growing older with cystic fibrosis, and access relevant support and information.
• Work and CF - Information on work and CF, including details of organisations that can provide support with discrimination.
• CF Forum - Join the conversation on our Forum and connect with other people with CF.
• Kaftrio - complex and individual experiences - This factsheet contains information for people with CF and their families, whether they are taking Kaftrio or not. It includes information about dealing with mixed emotions, managing changes, the reactions of family and friends, and other possible impacts of the Kaftrio.
• Cross infection - Cross-infection, or cross contamination, occurs when one person spreads an infection to another, either directly or indirectly. Find out how cross-infection affects people with cystic fibrosis, and what is done to combat the issue.
• Research that’s underway that could help those who don’t benefit from CFTR modulators
• FeBrewary - Make your cuppa count this FeBrewary. Host a tea party and raise vital funds, so we can continue to be there for everyone with CF.

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.