Cystic fibrosis (CF) is the most common life threatening genetic condition in
CF is a degenerative disease which affects many of the body’s systems including:
- The Respiratory System
- The Digestive System
- The Sweat Glands
- The Reproductive System
- The Liver
- The Bones
Treatment approaches to cystic fibrosis are individual, however, common treatments include:
- Intensive daily physiotherapy to clear the lungs
- Enzyme replacement tablets with every meal to help aid digestion
- Using air pressure devices to help clear the lungs
- Regular oral and/or intravenous antibiotic therapy to treat infections
- Daily nebulised medications to assist in opening the airways
- Daily salt and vitamin supplements
- High calorie diet
- Regular exercise
One in every 25 people, often unknowingly, carry the cystic fibrosis gene. Every four days a child is born with cystic fibrosis. For a child to be born with cystic fibrosis both parents must carry the CF gene. A person with CF must have two CF genes – one from each parent. When both parents are a carrier of the CF gene, one of the following outcomes will occur with every pregnancy:
- A one-in-four chance that the child will have CF
- A two-in-four chance that the child will not have CF – but will carry the CF gene
- There is a one-in-four chance that each baby will NOT have CF and NOT be a CF carrier
Improvements in treatment over the last 50 years mean that now most children will live to an average age of 37. This is fantastic progress, but has also brought about new health challenges such as CF related diabetes and osteoporosis.
Children and adults with CF and their families also face considerable financial, practical and emotional challenges living with a chronic illness.
Cystic Fibrosis
Cystic Fibrosis
At Cystic Fibrosis
Services provided by CFQ include:
- Cottage accommodation facility
- Counselling and emotional support for children, adults and their families
- Free CF-related respiratory equipment and oxygen
- Sponsorship of education in CF care for health professionals
- Outreach programs to regional areas
- Sibling Activity Days, Mothers Respite Activities and Dads’ Days Out
- Respite physiotherapy
- Funding for paediatric allied health staff to attend outreach clinics in regional areas
- Education and financial support for newly diagnosed families
- Referral, advocacy and lobbying
- Therapeutic massage services for adult patients in
- Boredom Buster bags for children in hospital
- Physical activities subsidies
- Transfers to hospital from the airport or train
- Conducting research into cystic fibrosis
Last year CFQ provided services to over 800 children and adults living with cystic fibrosis and their families, an increase of 27% in just 4 years. Less than 7% of our funding comes from government, which means we must raise $94 in every $100 we spend - so the financial support of our sponsors, donors, and members is vital to continue our work.
When you are living with CF, every day matters. For the Love of Life, means working together with our supporters to make each of those days the very best it can be.
