CForYourself: Parenting children with CF

08/02/22 • 51 min

CForYourself: A podcast from Cystic Fibrosis Trust

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

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

Previous Episode

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 [email protected].

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.

Next Episode

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 [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.