In the first episode of our Stronger Together series, Dr Keith Ooi and Adam Holmes are joined by Dr Bernadette Prentice for an open and informative conversation about Cystic Fibrosis Related Diabetes (CFRD) They also discuss the realities of treatment burden when living with CF, in particular the impact of modulator treatments.

They explore what CFRD is, how it’s diagnosed and managed, and the impact it can have on daily life. Adam shares his lived experience, while Dr Prentice emphasises that every person living with CF is unique, and that treatment plans work best when they are personalised to each individual’s circumstances and needs.

This episode is for people living with CF, families, carers, and anyone wanting to better understand the challenges and strengths within our community. It’s a conversation grounded in expertise, compassion, and connection reminding us that we are STRONGER TOGETHER

Dr Bernadette Prentice is a Paediatric Respiratory Physician in Sydney and a Fellow of the Royal Australasian College of Physicians. She completed her Respiratory Medicine training at Sydney Children’s Hospital and The Children’s Hospital at Westmead and holds a Master’s of Public Health and a PhD in Cystic Fibrosis. Dr Prentice is a Conjoint Lecturer at the University of New South Wales, teaching medical students, and has received awards including the Thoracic Society of NSW/Vertex Paediatric Clinical Fellowship and a National Health and Medical Research Council Scholarship. She has published widely on children’s lung conditions, including CF, asthma, and chronic cough, and has presented her research at national and international conferences. Her clinical interests include children’s asthma, recurrent cough, and chest infections.

Professor Keith Ooi is a Professor of Medicine at the University of New South Wales and a Consultant Paediatric Gastroenterologist at Sydney Children’s Hospital, Randwick. An internationally recognised expert, he specialises in gastrointestinal, pancreatic, nutritional, and liver conditions in children, including paediatric gastroscopy and colonoscopy. A Fellow of the Royal Australasian College of Physicians and the American Gastroenterology Association, Prof Ooi has received numerous national and international awards for his clinical and research contributions. He holds a PhD for his work in cystic fibrosis and pancreatic diseases and is a world-leading researcher in CF, paediatric pancreatic disorders, and the gut microbiome, with over 200 publications and major research funding from NHMRC and NIH.

Adam Holmes is a musician who plays and teaches the Drums. He is the drummer for an Australian pop band called EGOISM from Sydney, New South Wales.

In this FINAL episode of the Living Longer series, Kelly Exner, Clinical Services Manager, looks back and shares valuable insights on navigating this next stage of life with cystic fibrosis (CF). Drawing on her clinical experience and deep connection to the CF community, Kelly explores the challenges, opportunities, and evolving needs that come with living longer.

She offers practical guidance on finding the right supports, building strong care networks, and advocating for your wellbeing while also acknowledging the emotional and personal aspects of this transition. This episode is a thoughtful and reassuring conversation for anyone seeking clarity, confidence, and connection as they move into this next chapter.

In this episode of the Living Longer with CF, Nardia, Jade and Louisa share their lived experiences of navigating careers while living with cystic fibrosis. They speak openly about balancing work with health needs, managing energy and treatment schedules, and how career goals can shift over time.

Through honest conversation, they explore workplace disclosure, advocating for flexibility, navigating setbacks, and redefining success in ways that support both wellbeing and purpose. This episode offers reassurance, insight, and connection for anyone navigating work and identity while living with CF.

The views, experiences or comments shared in these stories are not medical advice and may not reflect opinions or beliefs of CF Together. Always seek the guidance of your doctor or other qualified health professional with any questions regarding your health. If you need any support, contact the National CF Support Line on 1300 CF HELP (23 4357).

In this episode in the Living Longer series, Nardia, Jade and Louisa come together to share their lived experiences of living longer with cystic fibrosis(CF), with a focus on nutrition and exercise. They speak honestly about what has changed over time, what’s helped (and what hasn’t), and how their relationship with food, movement, and their bodies has evolved across different stages of life.

Through personal stories and reflection, they explore the practical and emotional realities of sustaining health, adapting routines, and finding balance all while navigating the complexities of CF, Transplant and CF Related Diabetes (CFRD). This episode centres real voices from the community, offering reassurance, insight, and connection for anyone figuring out what living longer with CF looks like for them.

In this honest and informative episode of the CF Together Podcast, Jade and Louisa share their lived experiences of CF-related diabetes (CFRD). They speak openly about diagnosis, daily management, and the challenges of balancing blood sugars alongside the already complex realities of living with cystic fibrosis.

Through personal stories and reflection, Jade and Louisa explore the physical and emotional impacts of CFRD, how it affects identity and independence, and what they wish they’d known earlier. This episode offers reassurance, practical insight, and a strong sense of connection for anyone navigating CFRD or supporting someone who is. A reminder that lived experience matters, and that no one has to navigate CFRD alone.

In this honest and informative episode of the CF Together Podcast, Jade and Louisa share their lived experiences of CF-related diabetes (CFRD). They speak openly about diagnosis, daily management, and the challenges of balancing blood sugars alongside the already complex realities of living with cystic fibrosis.

Through personal stories and reflection, Jade and Louisa explore the physical and emotional impacts of CFRD, how it affects identity and independence, and what they wish they’d known earlier. This episode offers reassurance, practical insight, and a strong sense of connection for anyone navigating CFRD or supporting someone who is. A powerful reminder that lived experience matters, and that no one has to navigate CFRD alone.

The views, experiences or comments shared in these stories are not medical advice and may not reflect opinions or beliefs of CF Together. Always seek the guidance of your doctor or other qualified health professional with any questions regarding your health. If you need any support, contact the National CF Support Line on 1300 CF HELP (23 4357).

In this moving episode of the CF Together Podcast, Nardia shares her experience of cancer with honesty, courage, and deep reflection. She speaks openly about diagnosis, treatment, and the emotional toll cancer can take especially when navigating it alongside other health challenges.

Through her story, Nardia explores resilience, vulnerability, and the importance of support, while offering insight into how cancer reshapes identity, priorities, and everyday life. This episode creates space for understanding, compassion, and connection, and will resonate with anyone affected by cancer, whether personally or through someone they love.

Living longer with cystic fibrosis (CF) means navigating life stages that weren’t always part of the conversation including menopause. In this episode of Living Longer with CF, Nardia, Louisa and Jade share their lived experiences of menopause, speaking openly about the symptoms they faced, the impact on their bodies, and how they’ve managed this transition alongside CF.

Through honest reflection and shared wisdom, this conversation sheds light on an often overlooked topic, offering reassurance, validation and practical insights for others walking a similar path. Whether you’re experiencing menopause now, approaching it, or supporting someone who is, this episode creates space for understanding and reassurance.

In this insightful episode, Nardia, Jade and Louisa sit down to unpack the complex, emotional, and deeply personal journey of transplant while living with cystic fibrosis. They discuss what it’s really like to navigate the decision-making process, the hope and uncertainty that come with waiting, and the life-changing reality of receiving a transplant.

With honesty and heart, they explore the physical, emotional, and relational impacts of transplant, the gratitude and grief that often coexist, and the importance of support throughout every stage. Their conversation offers clarity, comfort, and connection for anyone wanting to better understand the transplant pathway within the CF community.

This episode is an empowering reminder that every transplant story is unique and that sharing these experiences helps us all feel less alone.

If you’re interested in learning more about transplant through the lived experiences of our community, you can read additional stories here

Catherines Story

Chris's Story

Emmanuelle's Story

The views, experiences or comments shared in these stories are not medical advice and may not reflect opinions or beliefs of CF Together. Always seek the guidance of your doctor or other qualified health professional with any questions regarding your health. If you need any support, contact the National CF Support Line on 1300 CF HELP (23 4357). 

⚠️ Trigger Warning:

This episode discusses themes of death, dying well, and end-of-life planning within the context of cystic fibrosis. These conversations can be deeply emotional and may be difficult for some listeners. Please take care while listening and pause or step away if you need to.

In this powerful episode of the CF Together Podcast, Nardia, Jade and Louisa open up an honest, compassionate conversation about what it means to die well while living with cystic fibrosis. Together, they explore the importance of planning ahead, communicating wishes, finding comfort, and prioritising dignity and choice. With vulnerability and wisdom, they share personal reflections, fears, and practical insights along with the unexpected sense of peace that can come from speaking openly about end-of-life care.

This episode gently encourages listeners to move toward conversations many avoid, helping us understand how talking about dying can shape the way we live, love, and support each other through the realities of CF.

The views, experiences or comments shared in these stories are not medical advice and may not reflect opinions or beliefs of CF Together. Always seek the guidance of your doctor or other qualified health professional with any questions regarding your health. If you need any support, contact the National CF Support Line on 1300 CF HELP (23 4357).