CForYourself: Living with an invisible condition

09/11/23 • 41 min

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.

(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.

Previous Episode

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 [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.

Next Episode

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 [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.

CForYourself: A podcast from Cystic Fibrosis Trust - CForYourself: Living with an invisible condition

Transcript

Season 2, episode 1: Living with an invisible condition

Lucy (host): Hello and welcome to season two of CForYourself, a podcast brought to you by UK charity Cystic Fibrosis Trust. I'm your host, Lucy Baxter, and I myself also have cystic fibrosis. I'm one of over 10,800 people in the UK living with the condition.

CF is a genetic disease that causes a build-up of sticky mucus in the lungs. So that means I can experience a range of different sympto