CFStrong: Inform. Educate. Empower.

In this CFStrong podcast episode, Alexa, a mother from Melbourne, shares her emotional journey after receiving her daughter Zoe's diagnosis of cystic fibrosis.

Alexa vividly recounts the moment she received the news, the overwhelming emotions that followed, and the subsequent whirlwind of appointments and reactions from family and friends.

Despite initial struggles and feelings of isolation, Alexa shares the importance of allowing oneself to feel the range of emotions, seeking information, and finding support. She offers reassurance to other parents facing similar situations, highlighting the gradual acceptance and adjustment process, and emphasising that while the journey may be daunting, there is hope and strength to be found along the way.

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In this final episode of the current CFStrong podcast series, co-host Brad Dryburgh engages six young adults living with cystic fibrosis (CF) in a profound discussion about their philosophy for leading fulfilling lives despite the challenges posed by the condition.

Through heartfelt reflections, the guests share their deeply personal perspectives on resilience, acceptance, and positivity in the face of adversity.

They emphasise the importance of embracing life's unpredictability, maintaining a positive mindset, and finding strength in vulnerability.

From acknowledging the unfairness of living with CF to harnessing the power of trust and resilience, each guest offers unique insights into navigating life's uncertainties with grace and determination.

Tune in to the Podcast to hear first-person stories, gain insights and discover coping strategies.

Transcript

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In this episode of the CFStrong podcast series, co-host Brad Dryburgh engages in candid discussions with six individuals living with cystic fibrosis (CF) in their 20s.

Addressing the question of fears and worries for the future while living with CF, each guest shares their unique perspective.

From concerns about the broader CF community and the impact of treatment disparities to personal reflections on life expectancy, relationships, career aspirations, and the emotional toll of witnessing loved ones' mortality, the conversation delves into the complexities of navigating life with CF.

Despite these fears, the episode highlights the resilience and self-awareness of the guests, emphasising the importance of staying busy and addressing these concerns head-on.

The conversation sheds light on the complexities of living with CF, providing a valuable perspective for both the CF community and those seeking to understand the challenges faced by individuals with this condition.

Tune in to the Podcast to hear first-person stories, gain insights and discover coping strategies.

Transcript

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In this episode of the CF Strong podcast, co-host Brad Dryburgh engages in an open dialogue with six young adults living with cystic fibrosis (CF) about the often-sensitive topic of body image.

As the eighth episode in the series, each guest, reflects on their personal experiences and struggles with body image, shedding light on the unique challenges faced by individuals with CF.

The candid conversations touch upon issues such as acne, weight gain, societal perceptions, and the journey towards self-acceptance. The guests share their personal triumphs and the liberating moments when they embraced their bodies.

Tune in to the Podcast to hear first-person stories, gain insights and discover coping strategies.

Transcript

Voice Over: Welcome to the CF Strong Podcast. CF Strong covers the successes and challenges faced by those living with cystic fibrosis. You'll hear first-person stories, conversations with health professionals, friends and partners. Just a heads up, guests may share their personal views about treatments and health management, but please remember, this is not medical advice and you should always follow the advice of your clinic team regarding your health. 

Brad: G'day everyone and welcome to this incredibly exciting new season of the CF Strong Podcast. I'm your host and fellow CF patient Bradley Dryburgh. And as a 20-something-year-old living with cystic fibrosis, I know that this decade of our life is not only challenging, but rather it comes with some big questions we ask of ourselves. I've taken the time to sit down with six guests who like me, are all in their twenties living with cystic fibrosis as they share their honest and unique perspectives on 10 big questions across 10 separate episodes. I'll ask one question of all six of our guests in this particular order. You can expect to hear answers from Adam, Blake, Caitlin, Ellie, Sam, and Taylor. In this eighth episode of our series, we'll hear from each of our six guests as they answer the question. It's not uncommon to hear that some people with CF experience challenges with body image. Have you had any experience with this personally? 

Adam: Yeah, I used to always feel really sad about being underweight. Um, but I just learned to love the skinny boy aesthetic. Um, and I don't, yeah, I don't know. I just don't really care what people think about my body because if they knew, I think they'd be pretty impressed. I think they'd be like, oh, keep, keep going, keep going. You're doing really well, you know, you're born with CF. Like, yeah, uh, yeah, it makes sense that this is the way it is. So I think it's just a lack of understanding from people, but it was pretty liberating the day that I, that I, realised that it doesn't really matter what people think, it's just about how I perceive myself. That's like the, the, the most important thing. 

Brad: What age do you believe you were, if you can recall, when you felt liberated by that thought? 

Adam: Definitely after high school. Um, teenage years are so crazy, uh, and teenagers are so crazy themselves. So probably 1920 was the real, like coming, coming to terms or accepting the way that I look. 

Blake: Uh, I think, uh, I think everybody does really, you know, obviously with, you know, my body type is just sort of, you know, I'm, you know, five foot, 11, whatever on the, you know, you know, a little bit taller than average, I guess. I don't know. And I've always been pretty skinny and lanky. So that, that was a massive thing I sort of dealt with, especially in school, you know, primary school a little bit. I was always short and skinny. And then, you know, once I hit high school, that's when, you know, all of those issues become way worse. But, um, you know, it's sort of, you know, it, it's sort of died down a little bit now. I'm not as worried about it anymore, but they do, you know, it,

In this episode of the CFStrong podcast series, Brad Drybugh explores the financial challenges faced by individuals living with cystic fibrosis (CF).

Through engaging conversations with six guests, the episode addresses the impact of CF on financial planning and explores benefit schemes that have helped along the way.

The guests share candidly about their struggles, successes, and strategies for managing finances, touching on topics such as relying on mobility allowance and grappling with fluctuating incomes to navigating the complexities of purchasing a home and managing expenses related to CF treatments and healthcare.

Tune in to the Podcast to hear first-person stories, gain insights and discover coping strategies.

Transcript

Voiceover: Welcome to the CF Strong Podcast. CF Strong covers the successes and challenges faced by those living with cystic fibrosis. You'll hear first person stories, conversations with health professionals, friends and partners. Just a heads up, guests may share their personal views about treatments and health management, but please remember, this is not medical advice and you should always follow the advice of your clinic team regarding your health.

Brad: G'day everyone and welcome to this incredibly exciting new season of the CF Strong Podcast. I'm your host and fellow CF patient Bradley Dryburgh. And as a 20-something-year-old living with cystic fibrosis, I know that this decade of our life is not only challenging, but rather it comes with some big questions we ask of ourselves. I've taken the time to sit down with six guests who like me, are all in their twenties living with cystic fibrosis as they share their honest and unique perspectives on 10 big questions across 10 separate episodes. I'll ask one question of all six of our guests in this particular order. You can expect to hear answers from Adam, Blake, Caitlin, Ellie, Sam, and Taylor. In this seventh episode of our series, we'll hear from each of our six guests as they answer. Having CF can cause financial stress. How are you planning financially for your future? And are there any benefit schemes that have helped you along the way?

Adam: Yeah, so I honestly haven't really planned for the future financially. Um, I never really, I just never developed that side of life because I've never really had the money to do it, you know, um, I suppose I'm on mobility allowance at the moment also, which helps a lot, uh, in terms of medication, you know, it just, honestly, it just covers me with my meds. Um, and that's, that's honestly really helpful. Um, but now I'm on Trikafta as well. I have been thinking about the future financially. I haven't really figured that out yet, but it is something I am currently going through.

Blake: Yeah, well, it's, uh, you know, on the finance end, for me, again, I'm very lucky to do what I do. This year has been the, you know, the year that the career in standup has really kicked off. Um, but there were, especially first moving to Melbourne from the country, you know, trying to pay rent, especially during the pandemic and stuff like that. Um, it got very, very rough at times. I remember there, you know, being some nights where, you know, I had less than 10 in the account. Um, so now that I do have a sort of, you know, a, a more, um, stable sort of income, you know, from, you know, doing shows here or there and just touring and stuff like that, it, it has allowed me to, you know, actually make a budget, you know, plan for the future. Obviously, being with my girlfriend, that's another income and we're just gonna save for a house, do all the stuff. I, I think, you know, I'm not really thinking in terms of CF at the moment, which I probably should, but I think at the moment I'm sort of just more focused on how can I do this as, as normally as possible. Um, 'cause you know, cfs a thing where, you know,

In this episode of the CFStrong podcast, co-host Brad Dryburgh explores the world of careers for individuals in their 20s living with cystic fibrosis (CF).

Featuring insights from six guests, the episode addresses the question of whether they are pursuing their ideal careers and if they've faced job rejections due to CF.

The candid responses reveal diverse experiences, From finding fulfillment in music and stand-up comedy to challenges in securing employment due to health-related limitations, the guests reflect on the impact of CF on their professional journeys. Despite encountering obstacles and misconceptions, they remain resilient, determined to follow their passions, and challenge stereotypes about CF in the workplace.

The episode sheds light on the complexities of balancing health needs with career aspirations and emphasises the importance of support and understanding in the professional realm for individuals with CF.

Tune in to the Podcast to hear first-person stories, gain insights and discover coping strategies.

Transcript

Voiceover: Welcome to the CF Strong Podcast. CF Strong covers the successes and challenges faced by those living with cystic fibrosis. You'll hear first-person stories, conversations with health professionals, friends and partners. Just a heads up, guests may share their personal views about treatments and health management, but please remember, this is not medical advice and you should always follow the advice of your clinic team regarding your health.

Brad: G'day everyone and welcome to this incredibly exciting new season of the CF Strong Podcast. I'm your host and fellow CF patient Bradley Dryburgh. And as a 20-something-year-old living with cystic fibrosis, I know that this decade of our life is not only challenging, but rather it comes with some big questions we ask of ourselves. I've taken the time to sit down with six guests who like me, are all in their twenties living with cystic fibrosis as they share their honest and unique perspectives on 10 big questions across 10 separate episodes. I'll ask one question of all six of our guests in this particular order. You can expect to hear answers from Adam, Blake, Caitlin, Ellie, Sam, and Tayla. In this episode of our series, we'll hear from all of our six guests as they answer the question. Are you pursuing your ideal career or have you encountered any jobs that wouldn't hire you because of your CF?

Adam: Uh, no. Um, you know, my ideal career, I, again, I've never really had an ideal career. I've always just been playing music and I'm still doing it. And, it never paid the bills in the beginning, it was just a lot of fun. It was a lot of passion, and everyone around me was freaking out being like, oh, what's Adam gonna do? But he is not, he's not studying, he is not getting a career. Like, you know, my family are really worried about that. And I completely get that. I completely understand why the beauty of time is that, I got somewhere with it and now I can teach drums. Now I can actually make a career out of it. I play in bands and there's money, there's some money there. I still have to work at a part-time job that isn't a career, it's just to pay the bills. But I think the passion over career has been probably the underlying theme of this whole thing. Like, oh, career. It's like, well, for me, I, I always thought I was gonna die young. Like, what? I don't really see a point in a career. I don't see the point in developing a skill in accounting or being, you know, working in finance. Like, I don't see the point in that for me, because that doesn't give me anything, you know, it only gives me material. It's like, it's too materialistic. And as I said, I'm so art peeled, I'm so music peeled that I, I, I would feel so, I, just wouldn't feel happy. I wouldn't feel me. I feel, I would feel like I'm chasing this thing that doesn't actually mean anything. Um,

In this episode of the CFStrong podcast, co-host Brad Dryburgh leads a candid discussion on the complexities of explaining cystic fibrosis (CF) to romantic partners.

Through the experiences of six individuals living with CF, listeners gain valuable insights into the challenges and triumphs of disclosing their condition in relationships.

From grappling with feelings of burden and anxiety to finding acceptance and support, the guests share their personal journeys of opening up about CF to their partners. Some recount initial struggles and misconceptions, while others reflect on the importance of honesty and self-acceptance in fostering meaningful connections.

Tune in to the Podcast to hear first-person stories, gain insights and discover coping strategies.

Transcript

Voiceover: Welcome to the CFStrong Podcast. CFStrong covers the successes and challenges faced by those living with cystic fibrosis. You'll hear first person stories, conversations with health professionals, friends and partners. Just a heads up, guests may share their personal views about treatments and health management, but please remember, this is not medical advice and you should always follow the advice of your clinic team regarding your health.

Brad: G'day everyone and welcome to this incredibly exciting new season of the CF Strong Podcast. I'm your host and fellow CF patient Bradley Drybar. And as a 20-something-year-old living with cystic fibrosis, I know that this decade of our life is not only challenging, but rather it comes with some big questions we ask of ourselves. I've taken the time to sit down with six guests who like me, are all in their twenties living with cystic fibrosis as they share their honest and unique perspectives on 10 big questions across 10 separate episodes. I'll ask one question of all six of our guests in this particular order. You can expect to hear answers from Adam, Blake, Caitlin, Ellie, Sam, and Taylor. In this fifth episode of our series, we'll hear from each of our six guests as they answer. When you've met someone special, be it a boyfriend, girlfriend, a partner of any kind, how do you explain your CF and has that been a challenging conversation to have? Let's hear their honest thoughts.

Adam: Yeah, I think in the beginning it was, it was really difficult. I didn't let anyone in. I didn't even bother seeing anyone or dating anyone because I just thought I was too much of a burden, uh, for anyone. I always thought I was gonna be like the patient and the person that I was with was gonna be my carer. Like, and I mean, it's fair, it's, it's a fair thing that I, that I thought that, 'cause I've been quite sick my whole life, but now that I'm, I'm healthier, um, it comes a little bit easier to explain that to someone, or I feel a lot more comfortable because I am healthier. And, um, not to say that when I was really sick that I couldn't explain that to someone. Um, I just think I had a lot of anxieties around relationships because of that. Now the anxieties have, have softened a little bit and explaining CF to people has come a lot easier. But that has also coincided with the fact that I've been a lot more open about my CF to the public and writing about it and sharing my experiences with people. Um, so I think a big part of it is just comfortability and letting people know, like no matter how sick, I, I think if I knew what I knew now and I was just as sick as I was before, um, I think I wouldn't really have much of an issue explaining it to a partner. But it also, it, it should also be said that it's important to know what your idea for a relationship is before you start looking for one, two. And that's something that's something really important to figure out too, because that, that'll give you all the light, that'll give you everything you need to know when approaching it.

Blake: Uh, yeah, well, my, just in my experience and yeah,

In this episode of the CFStrong podcast, co-host Brad Dryburgh guides listeners through a discussion on fitness and wellness routines among individuals living with cystic fibrosis (CF).

With a focus on the experiences of six young adults with CF, the episode explores how their fitness regimens have evolved over time and the benefits they've experienced.

From traditional physiotherapy routines to post-Trikafta adjustments, the guests share their diverse approaches to staying active and maintaining well-being. While some engage in activities like running, Pilates, and weightlifting, others find solace in more unconventional pursuits like drumming and golf.

Despite the challenges posed by CF, the guests highlight the transformative power of physical activity in managing their health and enhancing their quality of life.

Tune in to the Podcast to hear first-person stories, gain insights and discover coping strategies.

Transcript

Voiceover: Welcome to the CFStrong Podcast. CF Strong covers the successes and challenges faced by those living with cystic fibrosis. You'll hear first-person stories, conversations with health professionals, friends and partners. Just a heads up, guests may share their personal views about treatments and health management, but please remember, this is not medical advice and you should always follow the advice of your clinic team regarding your health.

Brad: G'day everyone and welcome to this incredibly exciting new season of the CFStrong Podcast. I'm your host and fellow CF patient Brad Dryburgh. And as a 20-something-year-old living with cystic fibrosis, I know that this decade of our life is not only challenging, but rather it comes with some big questions we ask of ourselves. I've taken the time to sit down with six guests who like me, are all in their twenties living with cystic fibrosis as they share their honest and unique perspectives on 10 big questions across 10 separate episodes. I'll ask one question of all six of our guests in this particular order. You can expect to hear answers from Adam, Blake, Caitlin, Ellie, Sam, and Tayla. In this fourth episode of our series, we'll hear from each of our six guests as they answer the question, do you have a fitness or wellness routine that works for you? And what benefits have you experienced as a product of that routine?

Adam: Um, it's changed a lot over the years, I would say before Trikafta and then after, well, currently taking Trikafta, um, it's changed completely. So before I was on Trikafta, it was wake up, do physiotherapy, pulmozyme oral medications. Like that was like, uh, I had to do that. That was just a part of my routine, and it was something that, I stuck with as much as I could because it kept me healthy. Um, now in Trikafta-world as I like to call it, um, it's different. Like I just wake up now and I go about my day and the things that I've replaced. Um, the, the things that I've replaced with that old, that old system have, have now just become like runs or, um, eating well or, um, trying my best to meditate or, or listen to good music and really enjoy the moments as much as I can. Um, so, you know, at the moment I currently go for runs. I really enjoy them because it's me, my headphones, and it's me in the world, and it's me in the air, and it's me in the cool breeze. And whenever I get home, I feel amazing. Um, I have the best days after I go for it. I definitely get that run as high. It's so good, um, uh, drumming as well is such a, is such a workout. Um, and it's so cathartic too, and that's the big part of my wellness routine. Even if I'm, if I'm not teaching, if I'm not playing in my band or playing professionally, even if I'm just playing by myself, it's so cathartic and it feels so good, and by the end of it, I'm usually drenched in sweat and, um, feeling incredible too.

Blake: Yeah, no, well, pretty much all of my fitness comes from walki...

Tony on clinical trials. Curious about clinical trials? Interested to learn more about how to take part? Keen to hear from someone who has been there and done that? In this episode of the CFStrong podcast we chat with Tony about his experience getting involved in clinical trials. Tony shares his experience and his advice for anyone interested in putting their hand up for a clinical trial.

Tony on clinical trials. Curious about clinical trials? Interested to learn more about how to take part? Keen to hear from someone who has been there and done that? In this episode of the CFStrong podcast we chat with Tony about his experience getting involved in clinical trials. Tony shares his experience and his advice for anyone interested in putting their hand up for a clinical trial.