“Game-changing, Life-changing, Extension of Life, Increased Quality of Life, as close to a Cure, Available for people 6yrs and older…”

These are all words and phrases we have heard mentioned and used heavily over the years, specifically in the last few months as incredible treatments, like Trikafta, have become available for a large number of Australians living with cystic fibrosis (CF).
 
However, the incredible strides taken over the past few years have been bittersweet for many people living with CF.
 
Why? Because these treatments are not accessible to everyone.
 
 
Zahra is 19 and lives with cystic fibrosis.
 
For Zahra, her daily living is significantly impacted by CF. Her lung function is, at best, 52%. She is out of breath all the time, coughing all the time, taking medications all the time, and completing physiotherapy all the time.
 
Zahra is exhausted. All the time.
 
Sadly, for Zahra, she is unable to work because of the impact of CF on her life.
1ECC9B56-9B11-45E4-AE7C-CDDA0258A318 - Zahra Carr (1)
Zahra has two rare mutations, which make her ineligible for Trikafta.
 
Over the past year, the Australian CF Community has seen great progress with increased access to treatments and therapies.
 
Reports in the media have helped highlight these successes, which for many of our community members, have genuinely been life-changing.
 
But, for many people with cystic fibrosis, like Zahra, this is not the case.

Cystic Fibrosis Australia plays a crucial role in driving the national advocacy for people with rare gene mutations. CF is a complex genetic disease and whilst there are some common gene mutations that cause CF, there are also many rare mutations that can make it difficult to diagnose and treat the disease.

 

Some gene mutations are so rare, that there are currently no treatments available to them.

 

“Hopefully in the future, there will be medicine so I can be and feel better.”

 

We hope so too and are committed to working tirelessly to accelerate this.

 

Zahra has a brother, his name is Izack, and he also has CF but it does not affect him in the same way. Unlike Zahra, Izack’s lung function is in the 90s and he has not had a hospital admission since 2021.

 

Zahra is in Hospital every two months.
 
(Image below, Izack & Zahra in hospital together when they were younger)
Zahra_Izack
Zahra and Izack are from the same family but are worlds apart in their experiences of CF.
 
Zahra explained, “Please understand that it’s so hard to live let alone thrive”.
 
As your peak national body, we work relentlessly for all Australians living with CF to ensure that no one is left behind and that everyone has access to the therapies they require. We cannot do this critical work alone.
 
 
Your generous gift will help support ongoing research, advocacy for access to more therapies, and quality care including patient and clinical improvements so that all people with CF, including those with rare gene mutations, can experience life-changing treatments.
 
With your partnership today, we can help all people with CF have longer and healthier lives.
 
Thank you for your support, please donate today.
 
All donations above $2 are tax-deductible.
DONATE HERE

Thank you for sharing your story Zahra

It takes a lot of courage to share your story, and Cystic Fibrosis Australia are incredibly thankful to Zahra for allowing us to share her story with the wider community.

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