Cystic Fibrosis organisations in Australia provide support and services to people with Cystic Fibrosis (CF) and their carers and families. This is complemented by a commitment to research and a quality improvement program focussing on improved clinical care for people with CF.
Every four days a baby is born in Australia with cystic fibrosis (CF) and more than one million Australians are carriers of cystic fibrosis. Cystic Fibrosis Australia (CFA) is committed to improving clinical practice and patient outcomes through its quality improvement programmes and research with the aim of extending life expectancy from 47 to 55 years by 2025.
Cystic Fibrosis is a recessive genetic condition. It primarily affects the lungs and digestive system because of a malfunction in the exocrine system, responsible for producing saliva, sweat, tears and mucus.
In addition to working for a cure, Cystic Fibrosis Australia also provides support and advocacy to improve the lives of people with cystic fibrosis. Get involved by raising awareness about CF, participating in a fundraising event or volunteering.
Cystic Fibrosis Australia has established a consistent approach to advocacy across Australia and is now a subject matter expert for government, industry and the media.
The Australian Cystic Fibrosis Research Trust (ACFRT) is managed by Cystic Fibrosis Australia (CFA). Since 1989 it has funded more than 300 projects valued at over $6,000,000.
Visit the media room to browse through number of resources including media representatives, press releases and reports.
Bone disease is a common complication of cystic fibrosis (CF). The cause of this is multifactorial, many reasons can contribute/cause bone disease in CF. Osteopenia is a condition when the bones become more brittle and weak; it can often lead to osteoporosis, and the bones are at more risk of breaking (fractures).
CF nutritional issues can affect the development of bones and muscles. Lower levels of physical activity, particularly weight bearing exercises, may also affect the development of bone strength and the maintenance of bone health.
CF bone disease can have a significant impact on lifestyle and quality of life. Consequences of bone disease can include limited mobility and function, pain, and increased burden of care. Bone disease may also limit involvement in certain physical activities for example contact sport or activities that may place the person at a higher risk of injury. This can have a direct impact or influence on mental health well-being.
Osteoporosis and osteopenia can happen at any age. It is more common in the late teens and in adults in people with CF.
New research is suggesting that the co-morbidities of CF in this area branch out even further than previously expected. For example, the use of estrogen-based birth control pills could be a factor in decreased bone density for women living with CF.
People living with CF often also have difficulty absorbing vitamin D, which is an additional risk factor for developing osteopenia.
CF and Bone/Muscle Health:
https://www.cysticfibrosisjournal.com/article/S1569-1993(17)30032-2/fulltext
https://cysticfibrosisnewstoday.com/2019/08/19/nebraskas-neena-nizar-seeks-cure-for-jansens-one-of-worlds-rarest-diseases/
https://cysticfibrosisnewstoday.com/2020/04/28/estrogen-birth-control-pills-could-lessen-bone-density-in-cf-study/
https://www.thelancet.com/journals/laneur/article/PIIS1474-4422(20)30028-4/fulltext
https://www.cff.org/Life-With-CF/Daily-Life/Fitness-and-Nutrition/Nutrition/Protecting-and-Maintaining-Bone-Health/Bone-Disease-and-CF/