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  • Body Image and Cystic fibrosis (CF)
    2025/07/04
    Lyndall Grace, our host for this episode of the CF Together Podcast, interviews Taylah about Body Image. Take a listen as they talk about their body image battles through the years - from school kids through to adulthood, now on modulators. Following Lyndall and Taylah, Raphael catches up with Julianna, a dietitian specialising in body image. Julianna has been working in CF over the past 15 years and offers a wealth of knowledge in her chat with Raph.
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    45 分
  • Newly Diagnosed: What I Know 4 Years on | Mandy – Mother of 4-year-old Rory, diagnosed with cystic fibrosis at birth
    2025/05/19

    In this heartfelt episode, host Lyndall Grace speaks with Mandy — early childhood educator, CF Together team member, and mum to four-year-old Rory, who lives with cystic fibrosis (CF). Mandy shares the emotional experience of Rory’s diagnosis through newborn screening, describing how she felt deeply overwhelmed then she and her partner focused on working together as a team, drawing on the strength of their family unit to find creative, consistent ways to care for Rory.

    Mandy reflects on how her early childhood background has shaped her parenting—transforming daily cystic fibrosis care into moments of connection, play, and learning. From turning physio into a game to using visual schedules and social stories, Mandy has adapted familiar tools to support Rory’s development and sense of agency.

    She also talks about the importance of whole-family wellbeing and how advocacy starts at home—with routines that work for everyone, shared responsibilities, and open communication. Her story is a beautiful reminder that with love, teamwork, and creativity, families can find strength and joy even in the face of complex health challenges.

    This episode is filled with warmth, insight, and practical tips for families navigating life with cystic fibrosis.

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    1 時間 2 分
  • "From IVF to Natural Birth: A New Mum’s Journey living with cystic fibrosis + latest research on Chronic Pain living with cystic fibrosis
    2025/05/04

    In this episode of the CF Together podcast, you will hear two heartfelt and powerful conversations from within the cystic fibrosis community.

    First, Lyndall Grace, who lives with cystic fibrosis, speaks with Savannah May about her incredible journey to motherhood. Savannah shares her experiences with IVF, the challenges and triumphs of parenting with CF, and the unexpected joy of conceiving her second child naturally after starting Trikafta.

    Then we hand the mic to Raphael Recht, who explores the often-overlooked topic of chronic pain in CF. He’s joined by joined by Anastasia Ward and Dr. Keith Ooi, who’ll walk us through their research findings on chronic pain in CF — a topic that’s gaining much-needed attention.

    And finally, Kelly Exner, Clinical Services Manager at CF Together, will talk about practical pathways to accessing help for chronic pain management.

    Follow here for more on Anastasia Wards Research into Chronic pain living with cystic fibrosis

    Pain in adults with cystic fibrosis – Are we painfully unaware? - Journal of Cystic Fibrosis

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    57 分
  • The Awkward Moments living with cystic fibrosis: Quickfire QnA
    2025/04/19

    In this episode, we tackle the tough, personal, and often uncomfortable questions that don’t always get talked about when we visit our cystic fibrosis (CF) team—those questions that many are thinking but may not know how to bring up.

    Should I wear protection during sex?

    Why do I keep getting thrush?

    Is vaping really that risky for someone with CF?

    What’s with the smelly farts?

    Can I kiss someone who has a cold?

    We’re joined by Kate, a CF Clinical Nurse Consultant, who gives expert, honest answers in a quick-fire round designed to break down stigma and bring clarity to tricky topics. Whether you’ve had these questions yourself or want to better understand the realities of CF, this episode is here to open the conversation—with respect, care, and zero judgement.

    We may talk cover topics that you could find triggering. If you would like to speak to someone, contact the National CF Support Line on 1300 CF HELP (23 4357) or email one of our support team at CFTogether on enquires@cftogether.org.au.
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    15 分
  • Self-Advocacy Living with cystic fibrosis
    2025/03/31
    Finding your voice to self-advocate can feel overwhelming at times. Gen, Gloria, and Kelly share valuable insights to help navigate the first steps in confidently asking for what you need.
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    35 分
  • Carrier testing, carrier screening and cystic fibrosis (CF)
    2025/03/17
    In this episode Stephanie Quattromani, Executive Manager, Services, Care and Research at CF Together catches up with Alison Archibald from Victorian Clinical Genetics Services, and Belinda McClaren from the Murdoch Children's Research Institute (MCRI) to talk about carrier testing and carrier screening. This episode covers the difference between carrier testing and carrier screening, why people may consider each option, and how you can access these services. Links mentioned throughout the episode include: CF Together Support - https://www.cftogether.org.au/cf-support Human Genetics Society of Australiasia - https://www.hgsa.org.au/ Murdoch Children's Research Institute - https://www.mcri.edu.au/ Take a listen and if you like the show please rate and subscribe. Got an idea for future episodes, or want to be involved, drop us a line at communications@cftogether.org.au.
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    38 分
  • Cystic Fibrosis, Male Fertility and becoming a DAD
    2025/02/21
    In our first episode of The CF Together Podcast, Raphael catches up with James and Davie to talk about their path to fatherhood and living with cystic fibrosis (CF). This episode will make you laugh, squirm and maybe even cry. It's a candid and raw discussion about the IVF journey that led to the magical moment when they both became Dads. The CF Together Podcast also features expert information at the end of each show. In this episode Stephanie Quattromani, Executive Manager, Services, Care and Research at CF Together talks about fertility and men with CF. Take a listen and if you like the show please rate and subscribe. Got an idea for future episode, or want to be involved, drop us a line at communications@cftogether.org.au.
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    41 分
  • Launching The CF Together Podcast
    2025/02/06

    Welcome to Season 1 of the CF Together Podcast.

    CF Together is a national organisation dedicated to improving the lives of people living with cystic fibrosis (CF), advancing CF care and ultimately finding a cure.

    We know the importance of sharing stories and creating community for people living with CF, that's why we are excited to welcome you to our first season of the CF Together Podcast.

    In upcoming episodes you will hear from members of the CF community, researchers and clinicians, covering topics such as fertility, parenting, ageing, menopause, chronic pain, life after transplant and a lot more.

    Subscribe to this Podcast to keep updated with the latest research as well as stories of lived experience from our community to help you feel more connected and supported, whether you're living with CF, or loving someone with CF.

    If you'd like to share your thoughts or have suggested topics for the podcast, we'd love to hear from you. Please drop us a line at communications@cftogether.org.au.

    If you enjoy this Podcast, don't forget to subscribe, rate and review.

    If you would like to make a donation to support the work of CF together, please visit www.cftogether.org.au.

    We are CF Together, changing futures together.

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    1分未満