CForYourself: A podcast from Cystic Fibrosis Trust

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 [email protected], 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. 

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 [email protected], 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 [email protected]. 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. 

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.

• 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. 
• Read our most recent blog about relationships and CF.
• Thinking of starting a family? A guide for adults with cystic fibrosis and their partners - Find out more about the considerations involved when deciding whether or not you'd like to start a family if you or your partner have cystic fibrosis.
• If you enjoying gaming too, then why not join us and #Game4CysticFibrosis. Anything you raise through gaming can make a real difference to everyone living with CF. By raising just £30 you could help cut the time it takes to turn lab research into life-changing medication.

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 [email protected], 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 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 [email protected], 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 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 testing 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 [email protected], 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 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 [email protected], 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 [email protected].

The podcast is also available on Spotify and Apple Podcasts. 

Living with cystic fibrosis 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 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]. 

• 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. 

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 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 episode 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 [email protected]. 
• Find lots more information on work and CF, including details of organisations that can provide support with discrimination.
• Discover our new programme of employment support. 

The podcast is also available on Spotify and Apple Podcasts. 

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 [email protected].

• CF: What's it all about? - watch our new animation, which is here to help children, their siblings and friends understand the condition in a fun and interactive way. 
• New diagnosis parent information pack - a series of resources to help families who have just found out that their child has cystic fibrosis.
• Helping your child with a physical health condition by Mandy Bryon and Penny Titman.
• CF Forum - Join the conversation on our Forum and connect with other parents.
• My Merry Moly World - Lizzy's blog
• Research that’s underway that could help those who don’t benefit from CFTR modulators

The podcast is also available on Spotify and Apple Podcasts. 

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 [email protected].

• Information on cross infection and CF - Find out how cross-infection affects people with cystic fibrosis, and what is done to combat the issue. 
• A new CF diagnosis - Information to help families deal with a new CF diagnosis 
• 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. 
• Find out more about Jordy and their work
• Follow Jordy on Instagram @jordydeelightofficial and Twitter @Jordy_deelight. 

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 [email protected].

• CF Forum - Join the conversation on our Forum and connect with other people with CF. 
• Thinking of starting a family? A guide for adults with cystic fibrosis and their partners - Find out more about the considerations involved when deciding whether or not you'd like to start a family if you or your partner have cystic fibrosis.
• 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.

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

But the aging process can also bring its own challenges and issues to contend with. As well as physical concerns as your condition changes over time, there can be emotional, social and financial impacts to think about too. Whether that’s planning for a family, the burden of care, or concerns about how you can provide financially for your loved-ones.  We’re going to be discussing all this and more in today’s episode of CForYourself.

Lucy enjoys a virtual cuppa and a chat with Tim Wotton about his experience of growing older with CF, including celebrating his 50th birthday, the breakthroughs he’s seen in his lifetime, and celebrating every breath.  In this episode’s ask the expert segment, we focus on money matters and the financial impact of growing older with CF, something that we know is a deep concern for many people at the moment, with the rises in costs of living. Nicky, who is Welfare Officer at the Trust, shares some top tips for how you can plan financially for a future that you might not have previously envisaged.

This episode deals with some issues that listeners may find upsetting, including life expectancy, miscarriage, bereavement and mental health. If you have questions about any of the topics raised in this episode, we're here for you. You can call our Helpline on 0300 373 1000, or email [email protected].

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

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

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 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 you may find upsetting, including life expectancy, mental health and Kaftrio. If you have questions about any of the topics raised in this episode, we're here for you. You can call our Helpline on 0300 373 1000, or email [email protected].

The views and experiences shared in this episode are individual to Charlotte and Lucy and may not reflect the experiences of others 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 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. 

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.

• For more information and support on any of the issues we've talked about in this podcast, you can call our Helpline on 0300 373 1000, or email [email protected]. 
• Find lots more information about the research we fund at the Trust.
• Visit our Clinical Trials Hub to find out more about clinical trials and how you can get involved. You can also take a look at our very own Trials Tracker: a CF clinical trials database to help you find suitable clinical trial opportunities.
• We fund research to tackle some of the most pressing issues in CF today. Find out how your donations are making a difference.
• Read our factsheet on Kaftrio - complex and individual experiences. It contains information for people with CF and their families, whether they are taking Kaftrio or not. It includes information about dealing with mixed emotions, managing changes, the reactions of family and friends, and other possible impacts of Kaftrio.

The podcast is also available on Spotify and Apple Podcasts.