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Facts, Figures and Publications

Cystic Fibrosis Australia, along with all State and Territory oragnisations have produced a range of material that can be downloaded about cystic fibrosis, advice on nutrition, exercise, ages and stages and more.

For the latest statistical information on cystic fibrosis (CF) in Australia including the prevalence and outcomes of various treatments, you can download the latest Data Registry Report.

On this page:

 

Carrier Screening and diagnosis

  • New Diagnosis Information for Parents

    Cystic Fibrosis (CF) is an inherited condition that affects many organs in the body. The organs most affected are the lungs and gut.

    Download Brochure
  • Carrier Screening

    Are you thinking about having a family? Carrier screening services are available in Australia to help you be informed and understand your options.

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  • Sweat Test

    A test to measure the amount of chloride (from salt) in the sweat of people suspected of having cystic fibrosis (CF).

    Download Brochure

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Medications and Procedures

  • Pill Swallowing

    Swallowing tablets and capsules is a skill that can be learned. Some learn faster than others.

    Download Brochure
  • Medications

    Medications help people with cystic fibrosis (CF) keep healthy and have a good lifestyle.

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  • PEG (Percutaneous Endoscopic Gastrostomy)

    In children and adults with cystic fibrosis, maintaining optimal nutrition may be problematic.

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  • PICC (Peripherally Inserted Central Catheter)

    A Peripherally Inserted Central Catheter (PICC) is a long, flexible tube that is usually placed in on the large veins in the arm.

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  • Ports

    A port, also known as an Infusaport, in an implemented central venous access device.

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School life

  • Infection Control in Schools

    Good infection control policies in schools can significantly lower infection rates.

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  • Starting school with CF

    Here are some tips to consider when your child with cystic fibrosis is getting ready to start school.

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  • Exercise and sport in school

    Exercise has many benefits and is an important part of the daily treatment routine for children with CF.

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  • CFSmart

    CFSmart has been developed by Cystic Fibrosis Western Australia (CFWA) and Cystic Fibrosis Community Care (CFCC)

    Visit CFSmart
  • A Guide to CF for Health Professionals

    Cystic Fibrosis (CF) is the most common autosomal recessive condition in Australia

    Read More Here

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Physiotherapy

  • Airway Clearance Techniques

    Airway Clearance Techniques are an essential part of management for people with CF.

    Download Brochure
  • Airway Clearance Techniques: Autogenic Drainage

    Autogenic Drainage is a controlled breathing technique that involved breathing at difference lung volumes to move mucas from the small airways to the large airways.

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  • Airway Clearance Techniques: Huff and Cough

    Huff changes the airflow in the airways to help ove mucas towards the mouth so it can be cleared more easily with a cough.

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  • Airway Clearance Techniques: MPD (Modified Postural Drainage) and Percussion

    MPD involves placing the child in different positions to help move mucas from different parts of the lungs.

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  • Airway Clearance Techniques: Positive Expiratory Pressure (PEP)

    Positive Expiratory Pressure (PEP) is a resistance breathing technique.

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  • Nebulisers

    A nebuliser is a device that changes liquid medication into an aerosol or mist so that it can be inhaled.

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CFFit: Exercise and Cystic Fibrosis Program

  • A Guide for People Living with CF

    This booklet is designed to assist people with cystic fibrosis (CF) to exercise safely at home or within their community. 

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  • A Guide for Personal Trainers

    This booklet is designed to provide information about cystic fibrosis (CF) and how it may affect an individual in an exercise or sporting environment.

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  • My Exercise Record

    Keep track of your goals and achievements with this easy to use exercise record. 

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Nutrition

  • Healthy Fats

    Fats are an essential part of our diet and are important for good health.

    Find Out More
  • Nutrition for Babies

    Babies with CF will have different dietary needs.

    Find Out More
  • Nutrition for Children

    Diet is particularly important in the management of cystic fibrosis.

    Find Out More
  • Nutrition for Adults

    A good CF diet can help you recover quickly from infections and give you more energy.

    Find Out More
  • A guide for Infants

    This booklet has been developed to provide you with practical, general and factual information about the nutritional needs of children with cystic fibrosis (CF) from birth to 2 years of age.

    Download Brochure
  • A guide for Children

    This booklet has been developed to provide you with practical, general and factual information about the nutritional needs of children with cystic fibrosis (CF) from ages 3 to 12 years of age.

    Download Brochure
  • A guide for Young People

    Did you know that food is like medicine and what you eat can influence how you feel physically? A healthy body weight can improve your lung function, help you recover quicker...

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  • A guide for Adults

    Nutrition is a very important part of managing CF and can play a big role in how well you feel.

    Find Out More

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Hospital

  • First Hospital Admission

    Although it may seem overwhelming, hospital admissions are essential to your child's health.

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  • Transition to Adult Hospital

    Transition is described as ‘the purposeful planned movement of adolescents and young adults...

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  • Procedural Anxiety

    Between 40 and 60% of children report anxiety before a medical treatment.

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Germs

  • Common Infections

    People with CF are at greater risk of getting lung infections.

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  • Pseudomonas

    Pseudomonas aeruginosa (Pa) is one of a number of bacteria that can infect people with Cystic Fibrosis (CF).

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Comorbidities (Issues that may arise alongside CF)

  • Continence

    Urinary Incontinence is now recognised as an issue facing females of all ages with CF.

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  • Bone Health

    Thinning of the bones can occur at an earlier age for people with CF.

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  • Cystic Fibrosis Related Diabetes

    Cystic Fibrosis Related Diabetes occurs in about 20% of adolescents.

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Lung Transplant

  • Lung Transplant

    Lung transplant is a well-established surgical procedure for some individuals with CF.

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Carers

  • Carers

    Carers are everyday people who provide unpaid care and support to family members and friends.

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  • Siblings

    Siblings of children with a chronic illness can face a number of challenges.

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Sexual Health and Fertility

  • Female Reproductive Information

    Women with CF may have irregular periods which may lead to problems with fertility.

    Download Brochure
  • Male Reproductive Information

    As people with CF live longer and healthier lives, many more are becoming parents.

    Download Brochure

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Travel

  • Travelling with Children with CF

    Travel is very rewarding and filled with the unexpected. Research your destination well – visas, vaccinations, transport, health alerts. Make copies of all travel and health documents. Purchase a changeable ticket so you can reschedule if unwell.

    Download Brochure
  • Travelling Tips for Adults with CF

    Travel is very rewarding and filled with the unexpected. Research your destination well – visas, vaccinations, transport, health alerts. Make copies of all travel and health documents. Purchase a changeable ticket so you can reschedule if unwell.

    Download Brochure

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Infection Control

Reducing the risk of infections in everyday life: Information for people with cystic fibrosis and their carer's in Australia.  This document has undergone peer review by the Thoracic Society of Australia and New Zealand.

Click HERE to read the document >

Tips to reduce Pseudomonas aeruginosa exposure, while being safe + having fun!
 

Click HERE to read the document >

Author's Statement:
The infographic “Tips to reduce Pseudomonas aeruginosa exposure, while being safe + having fun!” was produced in partnership by Honor Rose and Lizzie Deller. The creators are inspired to bring scientific research articles to the broader cystic fibrosis community and general public in engaging and easy-to-read formats. Thanks is also given to Dr. Ian Balfour-Lynn, the author of “Environmental risks of Pseudomonas aeruginosa — What to advise patients and parents”, Journal of Cystic Fibrosis. 2021 Jan;20(1):17-24, who kindly reviewed the adaption of his article into this infographic. The work is supported by Luggage not Baggage, a family-run fundraising group. The logo for Luggage not Baggage reflects the adventurous spirit we hope to instill in our children, despite all they may have to carry with them on their journey. 
Honor Rose - mother of a child with CF
 

Climate Change

Cystic Fibrosis is a complex disease that interacts with environmental factors, including air pollution and climate. With the ramifications of Climate Change increasingly being felt across the globe, we encourage individuals with cystic fibrosis to be conscious of the health risks of environmental exposure. Tremendous thanks to UNSW, CARCRE and Professor Donna Green for bringing together this sample of the literature on CF and Pollution/Climate.

Impact of Air Pollution on Cystic Fibrosis Pulmonary Exacerbations - A Case-Crossover Analysis

Paediatric Respiratory Reviews

Effect of Temperature on Cystic Fibrosis Lung Disease and Infections: A Replicated Cohort Study

Infection in cystic fibrosis: impact of the environment and climate

Air pollution exposure is associated with MRSA acquisition in young U.S. children with cystic fibrosis
 

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Exercise and Sport

Fluids In Sport - Fact Sheet

Eating and Drinking During Exercise - Fact Sheet

Consumer Connect Session 25th June 2019 - Exercise and Sport
 

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Gastrointestinal Cancers in Cystic Fibrosis

Please read the artilce HERE for further information.

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COVID-19 Information

Please read ther article HERE for further information.