CForYourself: A podcast from Cystic Fibrosis Trust Mon, 13 Apr 2026 09:30:02 +0100 https://cforyourself.buzzsprout.com en-gb © 2026 CForYourself: A podcast from Cystic Fibrosis Trust yes 01ff565a-345a-5fd2-b948-226dfdcfe680 Cystic Fibrosis Trust episodic false Buzzsprout (https://www.buzzsprout.com) Cystic Fibrosis Trust https://storage.buzzsprout.com/8gnhnngn64tpuk7sowa8lmhrsely?.jpg CForYourself: A podcast from Cystic Fibrosis Trust CForYourself: Gut symptoms in cystic fibrosis CForYourself: Gut symptoms in cystic fibrosis 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.

]]> 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.

]]> Cystic Fibrosis Trust Buzzsprout-18981807 Mon, 13 Apr 2026 09:00:00 +0100 2686 4 3 full true CForYourself: Body image and cystic fibrosis CForYourself: Body image and cystic fibrosis 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. 

]]> 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. 

]]> Cystic Fibrosis Trust Buzzsprout-18834399 Tue, 17 Mar 2026 09:00:00 +0000 2960 4 2 full true CForYourself: Celebrating #TeamCF CForYourself: Celebrating #TeamCF 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.

]]> 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.

]]> Cystic Fibrosis Trust Buzzsprout-18506430 Mon, 19 Jan 2026 09:00:00 +0000 2204 4 1 full false CForYourself: What I wish people knew about cystic fibrosis CForYourself: What I wish people knew about cystic fibrosis 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 helpline@cysticfibrosis.org.uk, 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. 
]]> 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 helpline@cysticfibrosis.org.uk, 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. 
]]> Cystic Fibrosis Trust Buzzsprout-17273537 Mon, 09 Jun 2025 12:00:00 +0100 2268 3 9 full false CForYourself: Clinical Trials Day and CF research CForYourself: Clinical Trials Day and CF research 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 helpline@cysticfibrosis.org.uk, 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. 
]]> 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 helpline@cysticfibrosis.org.uk, 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. 
]]> Cystic Fibrosis Trust Buzzsprout-17186740 Tue, 20 May 2025 09:00:00 +0100 2712 3 8 full false CForYourself: Self employment and the Helen Barrett Bright Idea Awards CForYourself: Self employment and the Helen Barrett Bright Idea Awards 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!

]]> 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!

]]> Cystic Fibrosis Trust Buzzsprout-17077949 Tue, 06 May 2025 09:00:00 +0100 2095 3 7 full false CForYourself: Employment and cystic fibrosis CForYourself: Employment and cystic fibrosis 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 helpline@cysticfibrosis.org.uk, 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. 
]]> 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 helpline@cysticfibrosis.org.uk, 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. 
]]> Cystic Fibrosis Trust Buzzsprout-16994499 Thu, 17 Apr 2025 20:00:00 +0100 2903 3 6 full false CForYourself: 60th anniversary special with Chief Executive David Ramsden CForYourself: 60th anniversary special with Chief Executive David Ramsden 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. 

  • 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 helpline@cysticfibrosis.org.uk, or message us on WhatsApp.
  • 60th anniversary year - Find out more about how we've marked out 60th anniversary year. 
  • Growing older with CF - Find out more about growing older with cystic fibrosis, and access relevant support and information.
  • CF genetic therapies - Find out what they are, whether they might benefit you and learn more about genetic therapy clinical trials.
  • Paul's story - Read more about Paul's CF story. 
  • FeBrewary - Make your cuppa count this FeBrewary. Donate the cost of your brew and help raise vital funds, so we can continue to be there for everyone with CF. 
  • CF Forum - Join the conversation on our Forum and connect with other people with CF. 

Read the transcript for this episode.

]]> 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. 

  • 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 helpline@cysticfibrosis.org.uk, or message us on WhatsApp.
  • 60th anniversary year - Find out more about how we've marked out 60th anniversary year. 
  • Growing older with CF - Find out more about growing older with cystic fibrosis, and access relevant support and information.
  • CF genetic therapies - Find out what they are, whether they might benefit you and learn more about genetic therapy clinical trials.
  • Paul's story - Read more about Paul's CF story. 
  • FeBrewary - Make your cuppa count this FeBrewary. Donate the cost of your brew and help raise vital funds, so we can continue to be there for everyone with CF. 
  • CF Forum - Join the conversation on our Forum and connect with other people with CF. 

Read the transcript for this episode.

]]> Cystic Fibrosis Trust Buzzsprout-16652049 Thu, 20 Feb 2025 10:00:00 +0000 2793 3 5 full false CForYourself: Exercise and CF CForYourself: Exercise and CF 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 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. 

]]> 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 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. 

]]> Cystic Fibrosis Trust Buzzsprout-16474705 Thu, 23 Jan 2025 12:00:00 +0000 2884 3 4 full false CForYourself: Navigating a new diagnosis 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 helpline@cysticfibrosis.org.uk, 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. 
]]> 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 helpline@cysticfibrosis.org.uk, 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. 
]]> Cystic Fibrosis Trust Buzzsprout-16214633 Thu, 12 Dec 2024 11:00:00 +0000 2882 3 3 full false CForYourself: Pregnancy and CF CForYourself: Pregnancy and CF 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 helpline@cysticfibrosis.org.uk, 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. 
]]> 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 helpline@cysticfibrosis.org.uk, 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. 
]]> Cystic Fibrosis Trust Buzzsprout-16063798 Thu, 14 Nov 2024 09:00:00 +0000 3137 3 2 full false CForYourself: Talking transplant 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. 

]]> 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. 

]]> Cystic Fibrosis Trust Buzzsprout-15806720 Thu, 26 Sep 2024 11:00:00 +0100 2000 3 1 full false CForYourself: Behind the scenes at Cystic Fibrosis Trust CForYourself: Behind the scenes at Cystic Fibrosis Trust 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! 

]]> 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! 

]]> Cystic Fibrosis Trust Buzzsprout-15238375 Wed, 12 Jun 2024 16:00:00 +0100 2479 2 8 full false CForYourself: Youth Advisory Group takeover CForYourself: Youth Advisory Group takeover 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.

  • 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 helpline@cysticfibrosis.org.uk, or message us on WhatsApp.
  • CF Forum - Join the conversation on our Forum and connect with other people with CF.
  • CF and transition - Find out about the move from paediatric to adult care and what it could mean for you and your family.
  • Secondary school and CF - Whether you're a parent, young person or teacher, here you can find out more about the issues surrounding CF and secondary school education.
  • Work Forwards - Find out about our programme of employment support for people with CF and their loved ones. 
  • Financial support - Cystic fibrosis can bring its own financial burden. 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.
  • Join YAG - We're always looking for new people to join us, so if you're 14-25 years old and have CF or are close to someone who does (like a brother or sister) and would like to get involved, drop us an email at cfyouth@cysticfibrosis.org.uk.

The podcast is also available on Spotify and Apple Podcasts. 

]]> 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.

  • 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 helpline@cysticfibrosis.org.uk, or message us on WhatsApp.
  • CF Forum - Join the conversation on our Forum and connect with other people with CF.
  • CF and transition - Find out about the move from paediatric to adult care and what it could mean for you and your family.
  • Secondary school and CF - Whether you're a parent, young person or teacher, here you can find out more about the issues surrounding CF and secondary school education.
  • Work Forwards - Find out about our programme of employment support for people with CF and their loved ones. 
  • Financial support - Cystic fibrosis can bring its own financial burden. 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.
  • Join YAG - We're always looking for new people to join us, so if you're 14-25 years old and have CF or are close to someone who does (like a brother or sister) and would like to get involved, drop us an email at cfyouth@cysticfibrosis.org.uk.

The podcast is also available on Spotify and Apple Podcasts. 

]]> Cystic Fibrosis Trust Buzzsprout-14933392 Mon, 22 Apr 2024 16:00:00 +0100 2469 2 7 full false CForYourself: Navigating grief and CF carrier testing with James Dunmore CForYourself: Navigating grief and CF carrier testing with James Dunmore 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.

  • 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 helpline@cysticfibrosis.org.uk, or message us on WhatsApp
  • Find out more about the support available to help you cope with the loss of a loved one with CF.
  • 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.

The 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.

  • 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 helpline@cysticfibrosis.org.uk, or message us on WhatsApp
  • Find out more about the support available to help you cope with the loss of a loved one with CF.
  • 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.

The podcast is also available on Spotify and Apple Podcasts. 

]]> Cystic Fibrosis Trust Buzzsprout-14718692 Tue, 19 Mar 2024 10:00:00 +0000 1641 2 6 full false CForYourself: Research using lung MRI in CF CForYourself: Research using lung MRI in CF 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.

  • 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 helpline@cysticfibrosis.org.uk, or message us on WhatsApp.
  • If you want to take part in a clinical trial, take a look at our Trials Tracker, which brings together all CF trials currently recruiting in the UK. You can find trials you can take part in both in your region and further afield.
  • Join our Involvement Group to share your lived experience and insights to influence the work of the Trust and future research. Whether you have CF yourself or are a parent, partner, or family member of someone with CF, you're welcome to join. By sharing your insights, you can make sure that the lived experiences of people with CF are at the core of everything we do.   

The 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.

  • 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 helpline@cysticfibrosis.org.uk, or message us on WhatsApp.
  • If you want to take part in a clinical trial, take a look at our Trials Tracker, which brings together all CF trials currently recruiting in the UK. You can find trials you can take part in both in your region and further afield.
  • Join our Involvement Group to share your lived experience and insights to influence the work of the Trust and future research. Whether you have CF yourself or are a parent, partner, or family member of someone with CF, you're welcome to join. By sharing your insights, you can make sure that the lived experiences of people with CF are at the core of everything we do.   

The podcast is also available on Spotify and Apple Podcasts. 

]]> Cystic Fibrosis Trust Buzzsprout-14456706 Wed, 07 Feb 2024 10:00:00 +0000 2573 2 5 full false CForYourself: CF and interior design with Jack Kinsey CForYourself: CF and interior design with Jack Kinsey 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.

  • 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 helpline@cysticfibrosis.org.uk, or message us on WhatsApp
  • Check out our ‘Work Forwards’ programme of employment support for free tailored careers information, advice, and guidance for people with CF and their loved ones.
  • Find lots more information on work and CF, including details of organisations that can provide support with discrimination.

The 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.

  • 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 helpline@cysticfibrosis.org.uk, or message us on WhatsApp
  • Check out our ‘Work Forwards’ programme of employment support for free tailored careers information, advice, and guidance for people with CF and their loved ones.
  • Find lots more information on work and CF, including details of organisations that can provide support with discrimination.

The podcast is also available on Spotify and Apple Podcasts. 

]]> Cystic Fibrosis Trust Buzzsprout-14333561 Thu, 18 Jan 2024 15:00:00 +0000 1913 2 4 full false CForYourself: CF and dating with Lyndall Grace CForYourself: CF and dating with Lyndall Grace 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.

The 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.

The podcast is also available on Spotify and Apple Podcasts. 

]]> Cystic Fibrosis Trust Buzzsprout-13983825 Thu, 16 Nov 2023 12:00:00 +0000 2247 2 3 full false CForYourself: CF and the menopause CForYourself: CF and the menopause 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.

  • 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 helpline@cysticfibrosis.org.uk, or message us on WhatsApp
  • Read our blog about Menopause and CF. Or visit the NHS page on menopause, for more information and advice.   
  • Growing older with CF - Find out more about growing older with cystic fibrosis, and access relevant support and information.
  • If you’d like to talk to us about your experience with growing older with CF, or CF and menopause, please email us at stories@cysticfibrosis.org.uk. If you’d like to catch up with our most recent CF Live: Age and CF, where menopause is discussed, visit our CF LIVE page.

The 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.

  • 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 helpline@cysticfibrosis.org.uk, or message us on WhatsApp
  • Read our blog about Menopause and CF. Or visit the NHS page on menopause, for more information and advice.   
  • Growing older with CF - Find out more about growing older with cystic fibrosis, and access relevant support and information.
  • If you’d like to talk to us about your experience with growing older with CF, or CF and menopause, please email us at stories@cysticfibrosis.org.uk. If you’d like to catch up with our most recent CF Live: Age and CF, where menopause is discussed, visit our CF LIVE page.

The podcast is also available on Spotify and Apple Podcasts. 

]]> Cystic Fibrosis Trust Buzzsprout-13764772 Thu, 12 Oct 2023 10:00:00 +0100 2591 2 2 full false CForYourself: Living with an invisible condition CForYourself: Living with an invisible condition 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.

  • 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 helpline@cysticfibrosis.org.uk, or message us on WhatsApp
  • When it comes to diet and nutrition, everyone with CF is different. You should always seek individual advice from your CF dietitian.
  • For general information about a range of issues relating to diet, nutrition and CF, we have a series of leaflets that have been written by CF dietitians.
  • Check out our ‘Work Forwards’ programme of employment support for more information about disclosure of CF at work and how, when and why you should make an employer aware that you have CF.  The decision to tell your employer about your CF is a personal choice for you to make, but if you don’t tell them, it could affect your rights.
  • Find lots more information on work and CF, including details of organisations that can provide support with discrimination.
  • Speak out and share your CF truth. You can download our social media graphics and help others understand what everyday life is like for people with CF. Remember to tag us @cftrustuk and use the hashtag #CFTruths to join the conversation.
  • Discover our new programme of employment support.

The 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.

  • 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 helpline@cysticfibrosis.org.uk, or message us on WhatsApp
  • When it comes to diet and nutrition, everyone with CF is different. You should always seek individual advice from your CF dietitian.
  • For general information about a range of issues relating to diet, nutrition and CF, we have a series of leaflets that have been written by CF dietitians.
  • Check out our ‘Work Forwards’ programme of employment support for more information about disclosure of CF at work and how, when and why you should make an employer aware that you have CF.  The decision to tell your employer about your CF is a personal choice for you to make, but if you don’t tell them, it could affect your rights.
  • Find lots more information on work and CF, including details of organisations that can provide support with discrimination.
  • Speak out and share your CF truth. You can download our social media graphics and help others understand what everyday life is like for people with CF. Remember to tag us @cftrustuk and use the hashtag #CFTruths to join the conversation.
  • Discover our new programme of employment support.

The podcast is also available on Spotify and Apple Podcasts. 

]]> Cystic Fibrosis Trust Buzzsprout-13568459 Mon, 11 Sep 2023 11:00:00 +0100 2484 2 1 full false CForYourself: CF Week special on research and CF CForYourself: CF Week special on research and CF 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 helpline@cysticfibrosis.org.uk. 
  • 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. 

]]> 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 helpline@cysticfibrosis.org.uk. 
  • 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. 

]]> Cystic Fibrosis Trust Buzzsprout-13044299 Thu, 15 Jun 2023 09:00:00 +0100 2205 1 8 full false CForYourself: FeBrewary special CForYourself: FeBrewary special 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 helpline@cysticfibrosis.org.uk.

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. 
]]> 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 helpline@cysticfibrosis.org.uk.

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. 
]]> Cystic Fibrosis Trust Buzzsprout-12192241 Mon, 06 Feb 2023 11:00:00 +0000 1990 full false CForYourself: Growing older with CF CForYourself: Growing older with CF 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 helpline@cysticfibrosis.org.uk.

The views and experiences shared in this episode are individual to Tim and Lucy and may not reflect the experiences of the CF community. 

]]> 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 helpline@cysticfibrosis.org.uk.

The views and experiences shared in this episode are individual to Tim and Lucy and may not reflect the experiences of the CF community. 

]]> Cystic Fibrosis Trust Buzzsprout-11735086 Mon, 21 Nov 2022 11:00:00 +0000 2631 1 6 full false CForYourself: Relationships and CF CForYourself: Relationships and CF The relationships we form are such an important part of our lives, whether that’s with your partner, loved ones, or colleagues. They shape the people we are, and those closest to us see us through the good and bad times; the milestones, the laughs and the tears. But sometimes balancing a relationship and a condition like CF can bring extra challenges to navigate, and we’re talking about this, as well as all the positive things it can bring to a relationship, in this episode of CForYourself.  

Lucy enjoys a cuppa with her fiancée Phil, to get his perspective on being in a relationship with someone who has CF. She also chats to husband and wife Cameron and Heather about their Tinder love story, how they navigate their relationship with Cameron’s CF, welcoming their beautiful baby boy through IVF, and lots more.

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 helpline@cysticfibrosis.org.uk.

]]> The relationships we form are such an important part of our lives, whether that’s with your partner, loved ones, or colleagues. They shape the people we are, and those closest to us see us through the good and bad times; the milestones, the laughs and the tears. But sometimes balancing a relationship and a condition like CF can bring extra challenges to navigate, and we’re talking about this, as well as all the positive things it can bring to a relationship, in this episode of CForYourself.  

Lucy enjoys a cuppa with her fiancée Phil, to get his perspective on being in a relationship with someone who has CF. She also chats to husband and wife Cameron and Heather about their Tinder love story, how they navigate their relationship with Cameron’s CF, welcoming their beautiful baby boy through IVF, and lots more.

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 helpline@cysticfibrosis.org.uk.

]]> Cystic Fibrosis Trust Buzzsprout-11541247 Fri, 21 Oct 2022 09:00:00 +0100 3015 1 5 full false CForYourself bonus episode: Performing and CF CForYourself bonus episode: Performing and CF In this special bonus episode of CForYourself, Lucy enjoys a virtual cup of tea and a chat with the fabulous Jordy Deelight.

Jordy’s drag act The Real Housewife of Leith has delighted audiences – excuse the pun there - across the country, as well as raising vital awareness of cystic fibrosis. Their show The Honeymoon Period was all about lung transplants in CF and was even praised by the Scottish First Minister Nicola Sturgeon! 

Talking about their love of drag, Jordy says: “I always found the best thing about drag, and any kind of acting work really, was the space to explore exciting new things, your gender, your music, your identity, all of it can go hand and hand. It’s the escape part that truly saved my life at my lowest points.” 

In 2023 Jordy will be embarking on a new adventure as a non-binary artist and singer, with exciting plans to release music and a book all about their life. 

In this episode, Jordy chats about life with CF, balancing the condition with performing, discovering their identity, mental health and lots more.

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 helpline@cysticfibrosis.org.uk.

]]> In this special bonus episode of CForYourself, Lucy enjoys a virtual cup of tea and a chat with the fabulous Jordy Deelight.

Jordy’s drag act The Real Housewife of Leith has delighted audiences – excuse the pun there - across the country, as well as raising vital awareness of cystic fibrosis. Their show The Honeymoon Period was all about lung transplants in CF and was even praised by the Scottish First Minister Nicola Sturgeon! 

Talking about their love of drag, Jordy says: “I always found the best thing about drag, and any kind of acting work really, was the space to explore exciting new things, your gender, your music, your identity, all of it can go hand and hand. It’s the escape part that truly saved my life at my lowest points.” 

In 2023 Jordy will be embarking on a new adventure as a non-binary artist and singer, with exciting plans to release music and a book all about their life. 

In this episode, Jordy chats about life with CF, balancing the condition with performing, discovering their identity, mental health and lots more.

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 helpline@cysticfibrosis.org.uk.

]]> Cystic Fibrosis Trust Buzzsprout-11153238 Wed, 17 Aug 2022 11:00:00 +0100 2250 1 4 full false CForYourself: Parenting children with CF CForYourself: Parenting children with CF Families experience and cope with CF in a number of different ways. The journey is not always predictable or easy, and every child and every story is different.

In this episode of CForYourself, our host Lucy enjoys a (virtual) cuppa with Lizzy, mum to 16-year-old Isaac, who has cystic fibrosis. Lizzy talks openly and honestly about her personal experiences of parenting,  what she's learned along the way, her advice for other families, and her hopes for Isaac's future.  We also hear from paediatric clinical psychologist Michèle Puckey, who shares her top tips for talking to a child about CF.

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 helpline@cysticfibrosis.org.uk.

]]> Families experience and cope with CF in a number of different ways. The journey is not always predictable or easy, and every child and every story is different.

In this episode of CForYourself, our host Lucy enjoys a (virtual) cuppa with Lizzy, mum to 16-year-old Isaac, who has cystic fibrosis. Lizzy talks openly and honestly about her personal experiences of parenting,  what she's learned along the way, her advice for other families, and her hopes for Isaac's future.  We also hear from paediatric clinical psychologist Michèle Puckey, who shares her top tips for talking to a child about CF.

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 helpline@cysticfibrosis.org.uk.

]]> Cystic Fibrosis Trust Buzzsprout-11067350 Tue, 02 Aug 2022 09:00:00 +0100 3085 1 3 full false CForYourself: Work and cystic fibrosis CForYourself: Work and cystic fibrosis Growing up with CF, it’s completely normal to worry about what the future might hold; how CF might affect your working life and if you will still be able to achieve everything you want to. But it’s important to remember that more people with cystic fibrosis (CF) are in employment than ever before. And as far as possible, CF shouldn’t be a barrier to you achieving a fulfilling career and achieving your dreams, whatever that might mean for you. 

Working life when you have CF can also bring its challenges, though– whether that be a less than understanding employer, managing treatments at work or time off for hospital appointments. 

In this podcast we explore all that and more.  Our host Lucy enjoys a (virtual) cuppa with guests Rupert and Cicely, who share their experiences of working with CF, discuss some of the barriers they’ve faced, and reflect on their hopes and dreams for the future.  

 We’ll also hear from Matthew, who works on the Trust’s Helpline and will be answering your questions on CF and employment, as well as introducing the Trust’s new programme of employment support for the CF community. 

For information and support on any of the issues we talk about in the podcast, you can call our Helpline on 0300 373 1000, or email helpline@cysticfibrosis.org.uk. 

 You can find lots more information on work and CF, including details of organisations that can provide support with discrimination, on our website: https://www.cysticfibrosis.org.uk/life-with-cystic-fibrosis/work. 

Find out more about CForYourself at www.cysticfibrosis.org.uk/podcast. 

]]> Growing up with CF, it’s completely normal to worry about what the future might hold; how CF might affect your working life and if you will still be able to achieve everything you want to. But it’s important to remember that more people with cystic fibrosis (CF) are in employment than ever before. And as far as possible, CF shouldn’t be a barrier to you achieving a fulfilling career and achieving your dreams, whatever that might mean for you. 

Working life when you have CF can also bring its challenges, though– whether that be a less than understanding employer, managing treatments at work or time off for hospital appointments. 

In this podcast we explore all that and more.  Our host Lucy enjoys a (virtual) cuppa with guests Rupert and Cicely, who share their experiences of working with CF, discuss some of the barriers they’ve faced, and reflect on their hopes and dreams for the future.  

 We’ll also hear from Matthew, who works on the Trust’s Helpline and will be answering your questions on CF and employment, as well as introducing the Trust’s new programme of employment support for the CF community. 

For information and support on any of the issues we talk about in the podcast, you can call our Helpline on 0300 373 1000, or email helpline@cysticfibrosis.org.uk. 

 You can find lots more information on work and CF, including details of organisations that can provide support with discrimination, on our website: https://www.cysticfibrosis.org.uk/life-with-cystic-fibrosis/work. 

Find out more about CForYourself at www.cysticfibrosis.org.uk/podcast. 

]]> Cystic Fibrosis Trust Buzzsprout-10782442 Tue, 14 Jun 2022 07:00:00 +0100 2917 1 2 full false CForYourself: Mental health and cystic fibrosis CForYourself: Mental health and cystic fibrosis Living with cystic fibrosis (CF) means more than just a set of physical symptoms - it can also have an impact on our mental and emotional wellbeing. In this episode, our guest Sarah talks openly and honestly about how CF has affected her mental health; from struggling to fit in as teenager, to the complicated emotions she's experienced since taking Kaftrio. We also hear from CF psychologist Dr Maya Bowri, who shares her advice for what to do if you're struggling with your mental health.

For more information and support, you can call our Helpline on 0300 373 1000, or email helpline@cysticfibrosis.org.uk. 

For more information on Kaftrio, you can read our factsheet at: https://www.cysticfibrosis.org.uk/the-work-we-do/information-resources/publications.  It includes information about dealing with mixed emotions, managing changes, the reactions of family and friends, and other possible impacts of Kaftrio.

Find out more about CForYourself at www.cysticfibrosis.org.uk/podcast. 

]]> Living with cystic fibrosis (CF) means more than just a set of physical symptoms - it can also have an impact on our mental and emotional wellbeing. In this episode, our guest Sarah talks openly and honestly about how CF has affected her mental health; from struggling to fit in as teenager, to the complicated emotions she's experienced since taking Kaftrio. We also hear from CF psychologist Dr Maya Bowri, who shares her advice for what to do if you're struggling with your mental health.

For more information and support, you can call our Helpline on 0300 373 1000, or email helpline@cysticfibrosis.org.uk. 

For more information on Kaftrio, you can read our factsheet at: https://www.cysticfibrosis.org.uk/the-work-we-do/information-resources/publications.  It includes information about dealing with mixed emotions, managing changes, the reactions of family and friends, and other possible impacts of Kaftrio.

Find out more about CForYourself at www.cysticfibrosis.org.uk/podcast. 

]]> Cystic Fibrosis Trust Buzzsprout-10585776 Mon, 09 May 2022 16:00:00 +0100 2712 1 1 full false