Managing cystic fibrosis and its treatment burden can be expensive. 

Recent analysis by Cystic Fibrosis Trust reveals that the cost of living with CF has risen to a staggering £7,750 per year. With the rising costs of energy, transport to appointments, and other unavoidable expenses, one in four adults with CF and over a third of parents of children with CF report struggling to meet their monthly bills.

In this episode of CForYourself, our host Lucy is joined by Rachel Moore, Welfare Officer at the Trust, to discuss practical tips to manage finances, savvy ways to reduce household bills, and how you can navigate the emotional stress of money management.

• 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.
• Cystic Fibrosis Trust can offer grants, support you with benefits applications, and provide an Income Maximisation Service. Find out more at Financial support for cystic fibrosis. 
• We can provide individual, personalised support through our Student Support Service, to talk through a student’s circumstances.
• Find out more about the Green Doctors. 
• Find out more about the WaterSure scheme.
• Sign up to our monthly e-newsletter for all the latest CF news, personal stories and different ways you can get involved in our work.

Join us for a special CF Week episode of CForYourself. 

Our host Lucy speaks to actor and Cystic Fibrosis Trust supporter Vincent Franklin, star of iconic shows like Happy Valley, Bodyguard, and The Thick of It, about why supporting the Trust and the CF community is so important to him, what have been his career highlights so far, and the importance of raising awareness of cystic fibrosis. 

We also hear from Bev Burman Jones, Head of Events and Community Fundraising at the Trust, about the story behind Wear Yellow Day, the impact it has had since launching in 2014, and why raising funds and awareness for cystic fibrosis remains so important. 

• 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 CF Week and Wear Yellow Day and how you can get involved. 
• Kickstart conversations with our downloadable resources, designed to help you raise awareness during CF Week. 
• Sign up to our monthly e-newsletter for all the latest CF news, personal stories and different ways you can get involved in our work.

In this episode of CForYourself, we’re talking all about CF diabetes (CFD). 

CF diabetes is a distinct form of diabetes unique to people with CF. The
signs and symptoms of CF diabetes share similarities to both type 1 and type 2
diabetes, but the underlying cause is different.

CF diabetes can be a really difficult illness to manage alongside all the other
symptoms people with CF have to deal with, increasing the burden of treatment and risk of long term complications.

In this episode, we hear from Joseph about his lived experience of managing the condition day to day, and we speak to Professor Vicky Salem about her Cystic Fibrosis Trust-funded research into a potential new way to treat CF diabetes. 

• 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 CF diabetes and download our factsheet. 
• Read more about Professor Vicky Salem's research.
• Read about the ‘CL4P-CF’ research study, which is investigating a new way to manage CF diabetes. 
• Find out more about our Youth Advisory Group (YAG).

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.

• 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.
• Read more about the digestive system and cystic fibrosis. 
• Read our latest resources on nutrition, diet and CF. 
• Download our free booklet on body image and cystic fibrosis. 
• Read our recent blog about GI issues.
• Find out how you can get involved with the GRAMPUS-CF study.
• Read more about the research we're funding to treat symptoms and complications of CF throughout the body.
• You can find more information about the GRAMPUS-CF clinical trial on our Trials Tracker, along with lots of other open studies looking at everything from new CF treatments to exercise and CF. 

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. 

• 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.
• Download our free booklet on body image and cystic fibrosis. 
• Read our information on CF diabetes. 
• Read more about how a CF psychologist can support people with CF. 
• Beat is the UK’s eating disorders charity.
• Changing Faces is a UK charity for people with a mark, scar or condition that makes them look different. Visit 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:

• Colleen, mum to 7-year-old Ewan who has CF, shares the story behind Team Ewan, a fundraising group that has raised over £70,000 for the Trust over the years.
• Jamie, who lives with CF, talks about his incredible endurance challenges – marathons, Ironman events, and more – and how his CF motivates him to push past limits. As Jamie puts it: “CF is my fuel to build the fire that pushes me on to defy the odds.”

Join us for an uplifting conversation that shows how fundraising can make a difference.

• 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.
• Discover more about how you can fundraise for Cystic Fibrosis Trust.
• Find out about cross-infection and our policy at events. 
• Speak to a trained volunteer who also has a child with CF through our 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.

• 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.
• CF Week - Find out more about CF Week and Wear Yellow Day, and how you can get involved. 
• 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.
• Read Emily's blog on life with cystic fibrosis. 
• Find out more about CForYourself at www.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. 

• 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.
• CF Forum - Join the conversation on our Forum and connect with other people with CF.
• CF Clinical Trial Connect - Find out more about a global patient database designed exclusively for those unable to benefit from modulators, with the aim to make it easier to connect people with relevant clinical trial opportunities.
• Trials Tracker - Search CF clinical trials currently recruiting in the UK. 
• Our research goals - Read more about our research goals and the CF research we are funding. 
• Join our Involvement Group to share your lived experience and insights to influence the work of the Trust and future research. 

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!

• 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.
• Self employment - If you’d like more information on self employment, check out our dedicated website hub.
• Helen Barrett Bright Idea Awards - Read more about the awards and previous winners. 
• Work and CF - Our Work Forwards programme is here to empower people with cystic fibrosis to fulfill their career dreams and aspirations. Find out more about Work Forwards and how we can support you.
• CF Forum - Join the conversation on our Forum and connect with other people with CF. 
• Find out more about CForYourself at www.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. 

• 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.
• Work and CF - Our Work Forwards programme is here to empower people with cystic fibrosis to fulfill their career dreams and aspirations. Find out more about Work Forwards and how we can support you.
• CF Forum - Join the conversation on our Forum and connect with other people with CF. 
• ACAS - Can give you free advice on your rights and help you to resolve discrimination disputes with your employer.
• Find out more about CForYourself at www.cysticfibrosis.org.uk/podcast.