CForYourself: A podcast from Cystic Fibrosis Trust

In this episode we explore gastrointestinal (GI) symptoms in cystic fibrosis – from the impact they can have on daily life to the latest research looking into the causes. GI symptoms can range from tummy pain and bloating to not absorbing nutrients well, and even an increased risk of bowel cancer. They can be a daily challenge for people with CF – and can be really difficult to talk about. We’re here to break down some of those taboos, raise awareness and show people that they are not alone! Caitlin, who has CF, chats to our host, Lucy, about her experience of dealing with these symptoms and the emotional burden it can bring. We also hear from Professor Alan Smyth, principal investigator of the Trust-funded GRAMPUS‑CF Strategic Research Centre, which aims to link the specific gut symptoms people with CF experience to changes happening in the intestines. Professor Smyth explains more about why this research matters to the CF community, and how people with CF can get involved. helpline@cysticfibrosis.org.ukmessage us on WhatsAppdigestive system and cystic fibrosis. latest resources on nutrition, diet and CF. free booklet on body image and cystic fibrosis. recent blog about GI issues.GRAMPUS-CF study.research we're fundingTrials Tracker

Cystic fibrosis is different for everybody. With improving treatments and care, some people are able to take on great physical challenges, maintain healthy weight and muscle tone, and you might not even know they have CF from the outside. But this isn’t the case for everyone. Some people experience a range of physical and psychological difficulties, which can then have an impact on their body image and self-esteem. In the latest episode of our podcast, we explore some of the body image challenges people with CF may experience, as well as look at some coping strategies to help you navigate these feelings. Our host, Lucy, speaks with Annabelle, who has CF, about her experiences and feelings around body image. And we also chat to CF psychologist Dr Anna Shipton who provides expert support and advice for anyone dealing with these issues. Content warning: We do reference eating disorders in this episode. Please speak to your GP or CF team if the way you feel about your body is consistently negative and you, or someone close to you, notices it affecting your mood, health, work, study or relationships. helpline@cysticfibrosis.org.ukmessage us on WhatsAppfree booklet on body image and cystic fibrosis. information on CF diabetes. CF psychologist can support people with CF. Beat Changing FacesVisit their website.

In this month’s episode, we’re shining a spotlight on #TeamCF – our incredible community of supporters who go above and beyond to make life better for people living with cystic fibrosis. From bake sales and coffee mornings to marathons and mountain treks, thanks to the support of Team CF, Cystic Fibrosis Trust can campaign, support and research the way to a brighter future for everyone with CF. Our host, Lucy, has a virtual catch-up with two guests who embody what Team CF is all about: Join us for an uplifting conversation that shows how fundraising can make a difference. helpline@cysticfibrosis.org.ukmessage us on WhatsAppfundraise for Cystic Fibrosis Trust.cross-infectionour CF Connect peer support service

Over 11,000 people have cystic fibrosis in the UK, but it’s still widely misunderstood. Is that the condition where you cough a lot? Is it like asthma? Is that the one where you have to bash the chest? Is it contagious? But you don’t look very sick! The CF community will have heard them all! So in this special episode to mark CF Week, we're going to be talking about the actual reality of living with a life-limiting condition like CF. Joining Lucy for a chat is Emily. Emily is 22 and a university student. She was diagnosed with CF at three months old. They talk about all the things they wish people knew about CF, as well as sharing what it’s like to live with an invisible condition, tips for explaining it to friends and family, and why raising awareness is so important. helpline@cysticfibrosis.org.ukmessage us on WhatsAppCF WeekCross infection Emily's blogwww.cysticfibrosis.org.uk/podcast.

To mark Clinical Trials Day (20 May), we’re excited to be teaming up with US-based non-profit Emily’s Entourage on this episode of CForYourself. Started by Emily Kramer-Golinkoff in her parent’s living room, Emily’s Entourage (EE) aims to speed-up lifesaving research and drug development for people with cystic fibrosis (CF) who do not benefit from current modulators. “At Emily’s Entourage, we believe that every single person with CF deserves a lifesaving breakthrough, no matter how rare their mutation,” says Emily. Our host Lucy enjoys a (virtual) tea and catch-up with Emily, who chats all about her CF journey, the inspiration behind EE, and her hopes for the future. Also joining Lucy is Dr Maya Desai, a trustee at Cystic Fibrosis Trust and a consultant respiratory paediatrician, who has worked with children with CF since the early 1990s. Maya has been involved with the Trust’s Clinical Trials Accelerator Platform since its launch in 2017. She is particularly passionate about increasing diversity in clinical trials and ensuring everyone with CF has the opportunity to access life-changing new treatments. A big thank you to Emily and Maya for this insightful and powerful chat. helpline@cysticfibrosis.org.ukmessage us on WhatsAppCF Forum CF Clinical Trial ConnectTrials TrackerOur research goalsJoin our Involvement Group

This year, Cystic Fibrosis Trust is celebrating 10 years of the Helen Barrett Bright Idea Awards. The award was established in memory of Helen Barrett, an entrepreneur with CF who, together with her partner, launched a successful gym that is still thriving today. From dog grooming businesses to clothing brands, scriptwriters to bakers, over the years our Helen Barrett Bright Idea Awards have helped many people kickstart their dream career, providing financial support to adults with CF who dream of starting their own business. In today’s episode, Lucy chats to three incredible winners of the award. Maggie, who won the 2024 award and runs a private chef business. Polly, who is a past winner and a published author, and Jimmy, who is now part of the team at the Trust who helps run the awards, having won it himself back in 2022. In a wide-ranging conversation, they chat all about their CF journey, their businesses, and how being self employed helps them to manage cystic fibrosis. This year’s awards will be open to applicants in the summer, keep an eye on our social media for more information coming soon! helpline@cysticfibrosis.org.ukmessage us on WhatsApp.Self employmentour dedicated website hub.Helen Barrett Bright Idea AwardsWork and CFWork ForwardsCF Forumwww.cysticfibrosis.org.uk/podcast.

Work can be important for many reasons – our financial security, as part of our identity, for our mental health, our social lives, and to give us confidence. In the first of two episodes on work and CF, Lucy has a tea and catch-up with Charlotte, who has CF herself and works in HR. She shares her experience of managing work and health, discusses how to explain CF to colleagues, and offers some really useful tips around reasonable adjustments in the workplace. We also hear from Jimmy, who is Work Forwards Programme Manager here at Cystic Fibrosis Trust. He answers some of your questions on work and cystic fibrosis, and explains more about Work Forwards, our programme of employment support for the CF community. helpline@cysticfibrosis.org.ukmessage us on WhatsApp.Work and CFWork ForwardsCF ForumACASwww.cysticfibrosis.org.uk/podcast.

As it's 'FeBrewary', in this month's episode Lucy hosts her own virtual tea party on the pod. Joining her for a brew is David Ramsden, Chief Executive at the Trust, and our supporter Paul, who is 70 years old and has CF. This month also marks the end of our 60th anniversary year, so Lucy, David and Paul will be chatting about the progress we’ve seen over the past 60 years and reflecting on what’s changed for the CF community in that time. They'll also take a moment to look to the future, and the work that needs to be done to ensure everyone with CF can live a long and full life. "We've done so much as a community, but we're going to keep running hard to do more," says David Ramsden. helpline@cysticfibrosis.org.ukmessage us on WhatsApp.60th anniversary yearGrowing older with CF - CF genetic therapies Paul's storyFeBrewary CF ForumRead the transcript for this episode.

Many of us might have made a new year’s resolution to take up a new exercise in 2025, or maybe you have a sporty challenge is in your sights. So in the January episode of CForYourself we're talking all about staying active with cystic fibrosis. Lucy is joined by Matt, a personal trainer and running coach with CF. Matt has run marathons to raise money for Cystic Fibrosis Trust over the years and has recently worked with us to develop a running guide for people with cystic fibrosis. Matt shares how exercise has helped him and his top tips for staying active. Lucy also chats to CF physio Ruth, who is based at the Leeds Adult CF Centre. Ruth talks about the importance of physio and offers her advice for people with CF when it comes to exercise. Being active is really important for people with CF, but make sure you have a chat with your CF team before starting a new exercise regimen. They can also give you advice about training. Read our full transcript. helpline@cysticfibrosis.org.ukmessage us on WhatsAppmarathon training guideRead our informationRead our information YOGA-CF studyChoose your event. @mattstrangerunningcoaching. @cfphysioleeds.

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. helpline@cysticfibrosis.org.ukmessage us on WhatsAppDownload our guide for families. our CF Connect peer support serviceour Helpline

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. helpline@cysticfibrosis.org.ukmessage us on WhatsAppStarting a Family booklet. Find out morefactsheetHome-Start UK and Cystic Fibrosis TrustMATRIARCH SRC.

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. helpline@cysticfibrosis.org.ukmessage us on WhatsAppFind out moreRead our informationJoin our involvement groupinvolvement@cysticfibrosis.org.ukOrgan Donation Week.

In this special CF Week edition of CForYourself, our host Lucy goes behind the scenes at Cystic Fibrosis Trust. To mark our 60th anniversary, she chats to some of the team to hear about their role, the changes they’ve seen in their time at the Trust, challenges the community are facing, and hopes for the future. We hear from Belinda who works in the research team, Sangeeta, Welfare and Rights Advisor, Community Fundraising Manager Jess, and Eilidh, our Social Media Officer. An inspiring and informative chat which we hope you enjoy listening to! helpline@cysticfibrosis.org.ukmessage us on WhatsAppIssues that may be affecting you - CF WeekFinancial supportResearch on gut symptoms in CFCystic Fibrosis Trust pledge over £2m to address research priorities of people with CFCross infection

In episode seven, Lucy has a virtual catch-up with Tilly, Rosie and Tehya from the Trust’s Youth Advisory group, otherwise known as YAG. They talk about growing up with CF, managing friendships, transitioning from primary to secondary school, navigating high school with CF and so much more. We also hear from Ellie Mindel, Lead for Children and Young People at the Trust, to find out a little bit more about the YAG programme and how people can get involved. Read the full episode transcript. helpline@cysticfibrosis.org.ukmessage us on WhatsAppCF Forum CF and transitionSecondary school and CF Work ForwardsFinancial supportJoin YAG cfyouth@cysticfibrosis.org.ukThe podcast is also available on Spotify and Apple Podcasts.

In episode six, Lucy has a virtual catch-up with Cystic Fibrosis Trust ambassador and former star of Made in Chelsea, James Dunmore, who sadly lost both of his sisters, Lucinda (19) and Jodi (22) to CF when he was a young boy. They chat about his work with the Trust, his wonderful sisters, coping with grief and his experience going through the process of carrier teasing to find out if he is a carrier of a faulty CF gene. We’ll also be hearing from Becky Kilgariff, Joint Head of Information, Support and Programmes at the Trust to find out more about what carrier testing screening is and how it works, what it means to be a carrier, who can have carrier testing and where you can go for testing and further information. Read the full episode transcript. helpline@cysticfibrosis.org.ukmessage us on WhatsAppsupport availablefactsheetThe podcast is also available on Spotify and Apple Podcasts.

In episode five, our host, Lucy, talks all things research with Dr Laurie Smith from the University of Sheffield, who specialises in understanding how the lungs of people with CF are affected by the condition and Dan Beever, who has CF himself and works to ensure that patients are involved in the purpose, design and implementation of research studies and clinical trials. They chat about the first new Strategic Research Centre (SRC), Pulmonary Magnetic Resonance Imaging for Cystic Fibrosis (MAGNIFY study), they are both involved with which will investigate whether an exciting new type of magnetic resonance imaging (MRI) could be used to track subtle changes in lung health over time. We also hear from Dr Lucy Allen, Director of Research and Healthcare Data at the Trust, to give us the lowdown on the research we fund and the importance of these SRCs for the CF community. Read the full episode transcript. helpline@cysticfibrosis.org.ukmessage us on WhatsAppTrials TrackerJoin our Involvement GroupThe podcast is also available on Spotify and Apple Podcasts.

In episode four, our host, Lucy sits down with Jack Kinsey an interior designer from Norfolk, who appeared in series four of BBC Interior Design Masters, where he was awarded second place. They chat about his passion for design, his CF journey, appearing on TV and so much more! We also hear from Bekcy Kilgarrif, joint head of Information Support and Programs at Cystic Fibrosis Trust to give us the lowdown on the Trust's Work Forwards programme, which offers free tailored careers information, advice, and guidance for people with CF and their loved ones. Read the full episode transcript. helpline@cysticfibrosis.org.ukmessage us on WhatsAppWork Forwardsinformation on work and CFThe podcast is also available on Spotify and Apple Podcasts.

In episode three, our host, Lucy sits down with Lyndall Grace, star of season 10 of Married at First Sight Australia to chat about growing up with cystic fibrosis, keeping fit, opening up about CF in relationships, gaming, her future plans and so much more! At 7.15, Lyndall mentions she got an infection called C diff. This refers to Clostridium difficile, a type of bacterial infection that colonises the gut in susceptible hosts and can cause diarrhoea. We also hear from Matthew Delooze, Helpline Manager at the Trust, to find out all about the Trust’s forum and how people with CF can get support and advice from others in the community. Read the full episode transcript. helpline@cysticfibrosis.org.ukmessage us on WhatsAppCF Forumrecent blogThinking of starting a family? A guide for adults with cystic fibrosis and their partners - #Game4CysticFibrosisThe podcast is also available on Spotify and Apple Podcasts.

People with CF are living longer than ever due to advancements in effective treatments and care but the aging process can also bring its own challenges and issues to contend with. To mark Menopause Awareness Month, our host, Lucy sits down with 59 year old Jane, to talk about her experiences of going through the menopause, her top tips and the need for more awareness and information about CF and menopause. We will also chat about the need for geriatric and menopause specialists within CF teams. We also hear from Holly Ellard, Information Officer at the Trust, who shares some of the latest information and top tips for those with CF going through the menopause. Read the full episode transcript. helpline@cysticfibrosis.org.ukmessage us on WhatsAppour blogNHS page on menopauseGrowing older with CF CF LIVE pageThe podcast is also available on Spotify and Apple Podcasts.

You might not be able to see CF or what it does to the body. But it’s not invisible to the 10,800 people in the UK whose lives are dominated by it every single day. The challenge of living with cystic fibrosis is invisible. Except for the ones who live it. Kieron Smith, 26, was the face of our latest #CFTruths awareness campaign, ‘You don’t see CF’, that launched across the UK in April this year. As part of this, his face appeared on billboards and adverts to raise awareness of the realities of cystic fibrosis. In the very first episode of season two, our host, Lucy sits down with Kieron to hear more about his involvement in the campaign, his life with CF and the importance of raising awareness. (In this episode, Kieron is speaking from a personal capacity - all views are his own and not necessarily that of Cystic Fibrosis Trust.) We also hear from Sean Chapman, Head of Marketing at the Trust to give us the lowdown on the campaign and the response from the CF community. Read the full episode transcript. helpline@cysticfibrosis.org.ukmessage us on WhatsAppa series of leafletsWork Forwardsyour rightsinformation on work and CFdownload our social media graphicsprogramme of employment supportThe podcast is also available on Spotify and Apple Podcasts.