Contact Us

Phone
Alison Hey-Cunningham +61 2 9515 6651    

Email
alison.hey-cunningham@sydney.edu.au

Address
Centre of Research Excellence in Pulmonary Fibrosis
Respiratory Medicine and Sleep Unit
Level 11, Royal Prince Alfred Hospital
Camperdown NSW 2050

Facebook

Twitter

Online Enquiry

* Required fields

Information and Support for People with PF and their Carers

 

Information Sheets

  • Pirfenidone Fact Sheet

This resource is designed to help people living with pulmonary fibrosis to understand more about the antifibrotic medication, Pirfenidone. It provides information on what this medication does, special precautions to follow, the side effects it may cause, and what monitoring you will require from your healthcare team.

The fact sheet can be downloaded here.

  • Nintedanib Fact Sheet

This resource is designed to help people living with pulmonary fibrosis to understand more about the antifibrotic medication, Nintedanib (Ofev). It provides information on what this medication does, special precautions to follow, the side effects it may cause, and what monitoring you will require from your healthcare team.

The fact sheet can be downloaded here.

  • Mycophenolate Fact Sheet

This resource is designed to help people living with pulmonary fibrosis to understand more about the immunosuppressant medication, Mycophenolate (Cellcept, Myfortic). It provides information on what this medication does, special precautions to follow, the side effects it may cause, and what monitoring you will require from your healthcare team.

The fact sheet can be downloaded here.

  • Azathioprine Fact Sheet

This resource is designed to help people living with pulmonary fibrosis to understand more about the immunosuppressant medication, Azathioprine (Imuran). It provides information on what this medication does, special precautions to follow, the side effects it may cause, and what monitoring you will require from your healthcare team.

The fact sheet can be downloaded here.

  • Exercise and Pulmonary Fibrosis

This fact sheet provides practical knowledge and information on how to incorporate regular exercise into your everyday life. The resource covers topics such as how to get started with exercise, pulmonary rehabilitation, exercising safely and tips for exercising with a lung condition.

The fact sheet can be downloaded here.

  • Lung Transplant and Interstitial Lung Disease (ILD)

This fact sheet provides an understanding of lung transplantation and information to support you through the different stages of the journey.

The fact sheet can be downloaded here.

  • Sarcoidosis of the Lung

This fact sheet provides an understanding of the causes, symptoms and diagnosis of sarcoidosis. The resource provides information to support people living with sarcoidosis through symptom management, as well as an overview of the treatments available for sarcoidosis.

The fact sheet can be downloaded here.

  • Scleroderma with Interstitial Lung Disease

This fact sheet contains information about the causes, symptoms, diagnosis, management and treatments available for Systemic Sclerosis-related Interstitial Lung Disease (SSc-ILD).

The fact sheet can be downloaded here.

  • Connective Tissue Disease-associated Interstitial Lung Disease (CTD-ILD)

This fact sheet provides an understanding of the causes, symptoms and diagnosis of CTD-ILD. The resource provides information to support with symptom management and provides an overview of the treatments available for CTD-ILD.

The fact sheet can be downloaded here.

  • Hypersensitivity Pneumonitis

This fact sheet contains information about the causes, symptoms, diagnosis, management and treatments available for hypersensitivity pneumonitis.

The fact sheet can be downloaded here.

  • Cough and Breathlessness

This booklet contains information about the causes of cough and breathlessness and how to help you manage these symptoms.

The information booklet can be downloaded here.

  • How can Palliative Care help you?

This fact sheet contains information about the multidisciplinary approach to care for life-limiting, incurable disease, relevant to some types of Pulmonary Fibrosis.

The fact sheet can be downloaded here.

  • Non-pharmacological Treatment

This booklet contains information about therapies which are not medicine for people living with Pulmonary Fibrosis.

The information booklet can be downloaded here.

  • Preparing for Travel

This fact sheet contains information about preparing for travel for people living with Pulmonary Fibrosis.

The fact sheet can be downloaded here.

  • Living with Pulmonary Fibrosis - How can oxygen therapy help?

This booklet has been designed to help people living with pulmonary fibrosis understand more about the use of oxygen therapy.

The information booklet can be downloaded here.

  • Life with Pulmonary Fibrosis

This booklet contains information for people who have been diagnosed with Pulmonary Fibrosis and their Carers.

The information booklet can be downloaded here.

  • Other Health Conditions and IPF Fact Sheet

This fact sheet provides information on common comorbidities that people with IPF may experience.

The fact sheet can be downloaded here.

  • Managing Progression in IPF Fact Sheet

This fact sheet provides information on the progression of IPF and how to identify and manage common symptoms.

The fact sheet can be downloaded here.

  • Clinical Trials in Lung Diseases Fact Sheet

This fact sheet informs patients of the benefits of participating in a clinical trial and helps provide an understanding of the processes involved. 

The fact sheet can be downloaded here.

  • Antifibrotic treatments for IPF Fact Sheet

This fact sheet outlines the role of anti-fibrotic medication in IPF treatment and provides information on the use of these medications along with the common side effects that may be experienced. 

The fact sheet can be downloaded here.

  • Idiopathic Pulmonary Fibrosis Fact Sheet

This fact Sheet is designed for newly diagnosed IPF patients.

The fact sheet can be downloaded here.

 

Support Services

  • Pulmonary Fibrosis Peer Connect Service

The PF Peer Connect service, which is run by Lung Foundation Australia, matches people living with Pulmonary Fibrosis and their carers with someone going through a similar experience.

Learn more about the Peer Connect service here.

  • Pulmonary Fibrosis Support Groups

Support groups run by Lung Foundation Australia bring people with similar experiences together to help each other cope with challenges and encourage each other to live the best life possible.

Learn more about the Support Groups here.

 

Pulmonary Fibrosis Webinars

  • Topic: Influences of Air Quality on Lung Health

In this webinar, Professor Fay Johnston & Associate Professor Luke Knibbs provide insights into the effects of air quality on lung health. Our guest speakers discuss outdoor air pollution, bushfires, wood smoke and provide key takeaways for those living with a lung condition. Click here to view the recording.

  • Topic: Scleroderma and Interstitial Lung Disease

In this webinar, Dr Mathew Parker, Rheumatologist, and Dr Alan Teoh, Respiratory and Sleep Physician, along with patient Rossana Reyes, provided an overview of scleroderma and an insight into how to navigate the diagnosis and management of your condition, to get the most out of your treatment and care. Click here to view the recording.

  • Topic: An Introduction to Hypersensitivity Pneumonitis

In this webinar, Dr Hayley Barnes, Respiratory and Sleep Physician, and consumer advocate, Ted, provided an overview of Hypersensitivity Pneumonitis and an insight into how to navigate the diagnosis and management of your condition, to get the most out of your treatment and care. Click here to view the recording.

  • Topic: Spotlight on Pulmonary Fibrosis Research

In this webinar, Prof Tamera Corte provided an exclusive update on the new Centre of Research Excellence in Pulmonary Fibrosis (CRE-PF), including an overview of the focus areas influencing PF research. Prof Dan Chambers and Prof Jo Dickinson joined to provide further insight into some of the latest research projects in PF, including genetic research, drug development and clinical trials. Click here to view the recording.

  • Topic: Pulmonary fibrosis - Lived experience panel webinar

In this webinar, a pulmonary fibrosis patient panel of Linda, Lawrie, Vivienne and John shared their learnings and inspiring stories of their journey with pulmonary fibrosis from diagnosis and treatment, including medication and oxygen, through to the pre and post lung transplant journey.  A/Prof Lauren Troy joined to share her clinical knowledge and perspective on each of the topics. Click here to view the recording.

  • Topic: An introduction to Connective Tissue Disease-associated Interstitial Lung Disease (CTD-ILD) webinar

This webinar provides an overview of CTD-ILD and insight into how to navigate the diagnosis and management journey to get the most out of your treatment and care. Presented by Dr Adelle Jee, Respiratory and Sleep Physician and Tania, who is living with anti-synthetase syndrome. Click here to view the recording.

  • Topic: Diet and nutrition in Pulmonary Fibrosis

In this webinar, Christie Emsley, Accredited Practising Dietician, shares her expert knowledge on the role of diet and nutrition in the management of your lung condition, as well as how to manage medication side effects including weight loss and weight gain. Click here to view the recording.

  • Topic: An insight into the impact of IPF in Australia

This webinar provides an insight into the impact of Idiopathic Pulmonary Fibrosis (IPF) in Australia. View  Prof. Haydn Walters, Dr Ingrid Cox and Dr Qiang Zheng as they provide an overview of the University of Tasmania’s research into the epidemiology of IPF, including key statistics and the impact of IPF in Australia. Click here to view the recording.

  • Topic: Technology and care in PF management 

Presenters Dr Laura Glenn and Professor Anne HollandTechnology has changed our day-to-day lives in many ways. Now, more than ever we are connecting in with others and accessing services and medical care through technology. This webinar explores how technology plays an important role in the self-management of your lung condition, and include an insight into the Interstitial Lung Disease app. Click here to view the recording.

  • Topic: Lung transplantation in PF

Join Dr Jeremy Wrobel (Respiratory Physician) and Karen (PF patient) to learn more about lung transplantation in PF and its place in current treatment. Click here to view the recording.

  • Topic: Understanding palliative care and advance care planning

Join A/Prof Nicole Goh (Respiratory Physician) to learn about palliative care and benefits of early engagement with this service. Click here to view the recording.

  • Topic: Updates on treatment and management for PF

Dr Greg Keir (Respiratory and Sleep Physician) provides an update on recent changes in treatment and management of PF. Click here to view the recording.

  • Topic: Managing cough and breathlessness in PF

In this comprehensive session, Amanda McAnulty, Senior Physiotherapist in pulmonary, cardiac and chronic disease rehabilitation, shares tips and advice for managing cough and breathlessness in PF. Click here to view the recording.

  • Topic: Understanding PF clinical trials

Presenter: Prof Dan Chambers. This webinar for consumers provides an insight into clinical trials to help gain an understanding of what it means to participate in research and a pulmonary fibrosis clinical trial. Click here to view the recording.

  • Topic: The emotional impact of IPF

Presenter: Debra Sandford, Clinical Psychologist from the University of Adelaide and Royal Adelaide Hospital. Debra shares information regarding the emotional impact of IPF and the importance of taking care of your emotional wellbeing. Access the recording of this webinar here.

  • Topic: Self-management and PF

Presenter: Dr John Mackintosh, Respiratory and Lung Transplant Physician at Prince Charles Hospital. This webinar features information on self-management, including guidance on lifestyle and symptom management. John, an IPF patient advocate, also shares his experience of managing day-to-day with IPF. Access the recording of this webinar here.

  • Topic: Oxygen therapy and PF

Presenter: Susanne Webster, Clinical Nurse Consultant, Royal Prince Alfred Hospital. This webinar features information on oxygen therapy, including starting on oxygen, tips for incorporating oxygen into your life and travelling with oxygen. Access the recording of this webinar here.

  • Topic: Exercise and PF

Presenter: James Walsh, Clinical Consultant Physiotherapist from the Queensland Lung Transplant Service & Advanced Heart Failure and Cardiac Transplant Unit at the Prince Charles Hospital. James shared his knowledge to help develop a better understanding of exercising with this condition and the benefits of exercise for people living with Pulmonary Fibrosis. Access the recording of this webinar here.

  • Topic: Life with current IPF medications: The benefits and side effects 

Presenters: Dr Gregory Keir and Bill Van Nierop. Access the recording of the webinar here.

 

‘Thank you for asking’: Addressing consumer priorities in respiratory medicine research.

This public lecture was presented on October 29, 2021 by Professor Anne Holland, Professor of Physiotherapy and Head of Respiratory Research at Alfred Health and Monash University’s Central Clinical School. Professor Holland outlined the ways in which consumer experiences (good and bad) have prompted development of new interventions, given rise to clinical trials and changed clinical practice, and highlighted new opportunities to address the research priorities of people living with chronic lung disease. To see the recording on YouTube click here.

 

More patient and carer resources are currently being developed. For further information and support resources, please refer to the Lung Foundation Australia website.