CYSTIC FIBROSIS QUEENSLAND 

Cystic Fibrosis Queensland is the peak community not for profit charity working with and for the increasing number of people living with cystic fibrosis who attend a Queensland Health clinic for treatment. We advocate for the entire cystic fibrosis community and seek to raise much needed awareness of this debilitating condition - 90% of our income relies on fundraising.

CONTACT 

T: 07 3359 8000

E: fundraising@cfqld.org.au

P: PO Box 86 Toowong Business Hub, Toowong. 

WHAT IS CYSTIC FIBROSIS?

Cystic fibrosis primarily affects the lungs and digestive system because of a malfunction in the exocrine system that’s responsible for producing saliva, sweat, tears and mucus. There is currently no cure.​ People with cystic fibrosis develop an abnormal amount of excessively thick and sticky mucus within the lungs, airways and the digestive system. This causes impairment of the digestive functions of the pancreas and traps bacteria in the lungs resulting in recurrent infections, leading to irreversible damage. Lung failure is the major cause of death for someone with cystic fibrosis. From birth, a person with cystic fibrosis undergoes constant medical treatments and physiotherapy. 

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Cystic Fibrosis Queensland is the peak community, not-for-profit organisation working with and for people with cystic fibrosis. Its mission is to assist everyone affected by cystic fibrosis to be well and live fuller lives. It provides information, support and guidance to people living with cystic fibrosis and their families. It advocates for services and systems that support the cystic fibrosis community and seeks to raise awareness, understanding and funds for services and research. 

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  • Cystic fibrosis is the most common inherited, life threatening condition affecting young Australians.​

  • Cystic fibrosis is an inherited condition. For a child to be born with cystic fibrosis both parents must be genetic carriers for cystic fibrosis.​

  • Approximately 1 out of 25 Australians are genetic carriers for cystic fibrosis.​

  • 1 in every 2,500 babies in Australia will be born with cystic fibrosis.​

  • There are approximately 3000 people diagnosed with cystic fibrosis Australia wide.​

  • Cystic fibrosis a complex condition that affects the respiratory, digestive and reproductive systems.​

  • In Australia, all babies are screened at birth for the most common mutations of the cystic fibrosis gene using a test on a spot of blood. If this is positive, a sweat test will be done to measure the amount of salt in the sweat. It is the sweat test which provides the diagnosis of cystic fibrosis.​​

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  • If 2 people are genetic carriers for cystic fibrosis and they have a child, there is a:

  1. 25% chance that the child will have cystic fibrosis

  2. 50% chance that the child will be a genetic carrier for cystic fibrosis

  3. 25% chance that the child will not have cystic fibrosis and will not be a genetic carrier for cystic fibrosis.

  • It is a complex condition that affects the respiratory, digestive and reproductive systems.​

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  • People with cystic fibrosis often require relentless treatments, significant daily medications, physiotherapy and frequent hospitalisations. There is currently no cure.​

  • Major advances in treatment, particularly over the last 25 years, have enabled many people with cystic fibrosis to live active and productive lives.​

  • The average life expectancy for someone with cystic fibrosis born today is 37.​

  • Most people with cystic fibrosis undertake a range of treatments each day to maintain the health of their lungs. Treatment can be very time consuming, and may include chest physiotherapy, multiple inhaled and oral medications, and exercise.​

  • Most people with cystic fibrosis take enzyme replacement tablets with each meal to aid digestion. For some people this can mean taking up to 40 enzyme replacements tablets a day.​

  • Regular visits to cystic fibrosis clinics, hospitalisation and antibiotic treatment are common for people with cystic fibrosis.

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