CForYourself: A podcast from Cystic Fibrosis Trust
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Top 10 CForYourself: A podcast from Cystic Fibrosis Trust Episodes
Goodpods has curated a list of the 10 best CForYourself: A podcast from Cystic Fibrosis Trust episodes, ranked by the number of listens and likes each episode have garnered from our listeners. If you are listening to CForYourself: A podcast from Cystic Fibrosis Trust for the first time, there's no better place to start than with one of these standout episodes. If you are a fan of the show, vote for your favorite CForYourself: A podcast from Cystic Fibrosis Trust episode by adding your comments to the episode page.
CForYourself: Parenting children with CF
CForYourself: A podcast from Cystic Fibrosis Trust
08/02/22 • 51 min
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
- My Merry Moly World - Lizzy's blog
- CF Forum - Join the conversation on our Forum and connect with other parents.
- Research that’s underway that could help those who don’t benefit from CFTR modulators
CForYourself: CF Week special on research and CF
CForYourself: A podcast from Cystic Fibrosis Trust
06/15/23 • 36 min
CF week 2023 is all about celebrating the incredible progress we’ve already made in CF research, and looking forward to the breakthroughs we can make in the future.
In this extra special episode, our host, Lucy, chats with two guests, researcher Alice Collins and her brother Alexander, who has CF, about their work, life and childhood.
We also hear from Dr Paula Sommer, Director of Research and Healthcare Data at the Trust, about the importance of funding our research here at Cystic Fibrosis Trust.
It's thanks to our incredible supporters that we can continue to be at the cutting edge of CF research. Making breakthroughs and discoveries that change lives for the better. Now and in the future. But we know this is just the start. Incredible progress has been made, but there is still a long way to go until everyone with CF can truly live a life unlimited.
Donate today and help us unite for a life unlimited.
Read the full episode transcript on our website.
- For more information and support on any of the issues we've talked about in this podcast, you can call our Helpline on 0300 373 1000, or email [email protected].
- Find lots more information about the research we fund at the Trust.
- Visit our Clinical Trials Hub to find out more about clinical trials and how you can get involved. You can also take a look at our very own Trials Tracker: a CF clinical trials database to help you find suitable clinical trial opportunities.
- We fund research to tackle some of the most pressing issues in CF today. Find out how your donations are making a difference.
- Read our factsheet on Kaftrio - complex and individual experiences. It contains information for people with CF and their families, whether they are taking Kaftrio or not. It includes information about dealing with mixed emotions, managing changes, the reactions of family and friends, and other possible impacts of Kaftrio.
The podcast is also available on Spotify and Apple Podcasts.
CForYourself: Growing older with CF
CForYourself: A podcast from Cystic Fibrosis Trust
11/21/22 • 43 min
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
CForYourself: Pregnancy and CF
CForYourself: A podcast from Cystic Fibrosis Trust
11/14/24 • 52 min
As access to new treatments increases across the community, we have seen real progress for people with cystic fibrosis. For many, lives are getting longer and healthier and this means new doors are opening.
One area which has seen significant change, is the number of people with CF becoming parents. The latest UK CF Registry data revealed 116 women had babies in 2023. More than double the number from 2020.
Earlier this year, Cystic Fibrosis Trust announced the exciting news that we will be funding a new research project examining the impact of pregnancy, childbirth, and breastfeeding for those with CF. Researchers will also work with the Trust to develop new guidance on women's health throughout their lives.
This Strategic Research Centre, or SRC for short, will be led by Dr Imogen Felton and Professor Jane Davies of Royal Brompton Hospital and Imperial College in London.
Our host, Lucy, is joined for a virtual tea and chat by Dr Imogen Felton to chat all about this topic, along with Obstetric Physician Dr Rebecca Scott, who works in the CF maternal health service at Chelsea and Westminster Hospital and the Brompton, and Laura Visick, who has CF and recently became a mum to a little boy called Lucas.
Read the full transcript.
- For more information and support on any of the issues we've talked about in this podcast, you can call our Helpline on 0300 373 1000, or email [email protected], or message us on WhatsApp
- If you have cystic fibrosis, or have a partner with CF, and are thinking about having children, it’s completely normal to be grappling with lots of different questions about pregnancy. 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 straigh
CForYourself: FeBrewary special
CForYourself: A podcast from Cystic Fibrosis Trust
02/06/23 • 33 min
In this special bonus episode of CForYourself, we are celebrating the start of our FeBrewary fundraising campaign.
We know this can be a miserable time of year for many people: Christmas has been and gone, the weather’s cold, and spring still seems so far away.
FeBrewary is a chance to brighten those gloomy days. Here at the Trust, we are encouraging the community to come together with friends and family during February– in person or online, host a tea party, and make your cuppa count.
To get in the spirit, Lucy is having a brew and catch up with the lovely Charlotte Bones. Charlotte is a supporter of the Trust and has raised vital funds over the years. Charlotte recently spoke movingly at our Carols by Candlelight service about her life with CF and how doctors advised her that, at age 27, she should prepare for the worst. She also talked about her experiences of the COVID-19 pandemic and a period of poor health, which left her in continuous pain.
“CF has never, and will never, get the better of me," Charlotte told the audience, and since starting Kaftrio, Charlotte's health has improved greatly.
In this episode, Lucy and Charlotte chat about a range of topics, including mental health, cross infection and Kaftrio. We also hear from Nicola, who works in our community fundraising team, about how listeners can get involved in FeBrewary 2023.
This episode deals with some issues that listeners may find upsetting, including life expectancy, mental health and Kaftrio. If you have questions about any of the topics raised in this episode, we're here for you. You can call our Helpline on 0300 373 1000, or email [email protected].The views and experiences shared in this episode are individual to Charlotte and Lucy and may not reflect the experiences of the CF community.
- Growing older with CF - Find out more about growing older with cystic fibrosis, and access relevant support and information.
- Work and CF - Information on work and CF, including details of organisations that can provide support with discrimination.
- CF Forum - Join the conversation on our Forum and connect with other people with CF.
- Kaftrio - complex and individual experiences - This factsheet contains information for people with CF and their families, whether they are taking Kaftrio or not. It includes information about dealing with mixed emotions, managing changes, the reactions of family and friends, and other possible impacts of the Kaftrio.
- Cross infection - Cross-infection, or cross contamination, occurs when one person spreads an infection to another, either directly or indirectly. Find out how cross-infection affects people with cystic fibrosis, and what is done to combat the issue.
- Research that’s underway that could help those who don’t benefit from CFTR modulators
- FeBrewary - Make your cuppa count this FeBrewary. Host a tea party and raise vital funds, so we can continue to be there for everyone with CF.
CForYourself: Behind the scenes at Cystic Fibrosis Trust
CForYourself: A podcast from Cystic Fibrosis Trust
06/12/24 • 41 min
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!
- 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.
- Issues that may be affecting you - Find out about Creon shortages, the NICE appraisal, and the cost of living crisis, what we're doing to help resolve these issues, and how we can support you.
- CF Week - Find out more about CF Week and Wear Yellow Day, and how you can get involved.
- 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.
- Research on gut symptoms in CF
- Cystic Fibrosis Trust pledge over £2m to address research priorities of people with CF
- 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.
CForYourself: Youth Advisory Group takeover
CForYourself: A podcast from Cystic Fibrosis Trust
04/22/24 • 41 min
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.
CForYourself: Living with an invisible condition
CForYourself: A podcast from Cystic Fibrosis Trust
09/11/23 • 41 min
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.
CForYourself: Research using lung MRI in CF
CForYourself: A podcast from Cystic Fibrosis Trust
02/07/24 • 42 min
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.
CForYourself: Mental health and cystic fibrosis
CForYourself: A podcast from Cystic Fibrosis Trust
05/09/22 • 45 min
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 [email protected].
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.
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FAQ
How many episodes does CForYourself: A podcast from Cystic Fibrosis Trust have?
CForYourself: A podcast from Cystic Fibrosis Trust currently has 18 episodes available.
What topics does CForYourself: A podcast from Cystic Fibrosis Trust cover?
The podcast is about Health & Fitness and Podcasts.
What is the most popular episode on CForYourself: A podcast from Cystic Fibrosis Trust?
The episode title 'CForYourself: CF Week special on research and CF' is the most popular.
What is the average episode length on CForYourself: A podcast from Cystic Fibrosis Trust?
The average episode length on CForYourself: A podcast from Cystic Fibrosis Trust is 41 minutes.
How often are episodes of CForYourself: A podcast from Cystic Fibrosis Trust released?
Episodes of CForYourself: A podcast from Cystic Fibrosis Trust are typically released every 48 days, 23 hours.
When was the first episode of CForYourself: A podcast from Cystic Fibrosis Trust?
The first episode of CForYourself: A podcast from Cystic Fibrosis Trust was released on May 9, 2022.
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