"I remember, I was 14, and I found out what the life expectancy was at the time, that it was 32. It just like hit me like a tonne of bricks and I remember my 16th birthday was one of the worst days cause it felt like it was the halfway point.
I was so angry that for some reason in life, you don’t remember the first five or six years, so it was like I haven’t even had ten years, so it was very unfair, and I didn’t know anyone else with anything like CF let alone CF, so it just felt very lonely.
It made me swear off a lot of things, like a lot of long-term things, a lot of ideas. That’s a big thing for a teenager who has already got enough going on."
Lyndall Grace, who brought cystic fibrosis to the mainstream when she got Married at First Sight, talks about changing life outcomes and the battles in navigating that path.
"I guess the excitement of Trikafta starting to settle has been trying to navigate what my purpose is now. Because my purpose was always just happiness.
What does long-term happiness look like, and how do I get that, and how do I make those adjustments, and am I doing it right because it’s not just 'Oh we'll do that because it looks fun,' it's like 'we'll do that but what are the repercussions and what is the flow on effect for the next few years'.
It's been really interesting and to grieve, like a sense of your identity as well. It’s pretty complex when your life outcomes change so drastically."
#cysticfibrosis #cfstrong - www.cfstrong.org.au
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"Cystic Fibrosis Community Care and Lex Projects, led by Raphael Recht, have joined forces to produce a compelling six-part short film series centered on the lives of young individuals managing cystic fibrosis. Through intimate interviews, captivating cinematography, and a deep dive into personal narratives, this series sheds light on the triumphs and challenges faced by those living with CF.
At the helm of this project is Raphael Recht, a 42-year-old multidisciplinary artist who himself grapples with cystic fibrosis. Drawing from his own experiences and artistic expertise, Raphael has dedicated years to exploring his identity and navigating life with CF. His previous endeavour, 'Lifexpectancy,' a conceptual hip-hop project, delved into his journey overcoming the hurdles of CF and learning disabilities to lead a fulfilling life.
Now, Raphael embarks on a new mission: to amplify the voices of others within the CF community. Through his lens as a filmmaker and photographer spanning nearly two decades, Raphael crafts poignant and visually stunning narratives that offer profound insights into the lived experiences of those with cystic fibrosis.
By partnering with us, Raphael aims to foster greater understanding and empathy for individuals battling the same condition he confronts daily. Through the power of storytelling, this series aims to educate, inspire, and uplift, ultimately fostering a more inclusive and supportive community for those affected by cystic fibrosis."
IG.
@Raphaelrechtproductions
@lifexpectancy
Video production by Raphael Recht Productions. www.raphaelrecht.com/about/
22 апр 2024
