Overview - Lung Foundation Australia

Being told you or someone you love has Pulmonary Fibrosis can be a very overwhelming and frightening experience. Pulmonary Fibrosis is part of a complex group of more than 200 diseases called Interstitial Lung Diseases (ILDs). Whilst research is increasing, very little is known about ILDs, so the medical information you receive may be limited or difficult to understand at times. There are also many decisions to be made about treatment and management as well as emotional and practical concerns.

What is Pulmonary Fibrosis?

Pulmonary Fibrosis (PF) is a type of rare lung disease that causes the tissue (interstitium) around the air sacs (alveoli) within the lungs to become thickened and scarred – this is called fibrosis. This scarring makes the lungs stiff which makes it increasingly difficult to breathe deeply. This stops the efficient delivery of oxygen into the bloodstream where it is needed to be transported to the rest of the body.

There are many types of PF. Some people with PF may already have features of other associated conditions such as rheumatoid arthritis or scleroderma. Idiopathic Pulmonary Fibrosis (IPF) is a specific disease where the underlying cause is unknown. It is important for your healthcare team to identify the underlying type of PF, to help determine the most appropriate treatment options for your condition. These webpages provide information that is common across the different types of PF. For information that is specific to your diagnosis, it is important that you speak with your healthcare team.

What can I expect to experience?

PF affects each person differently. The course of the disease is specific to each individual. It is influenced by factors beyond your diagnosis of PF, including the severity of your disease and other medical conditions.

With mild PF, you may not notice a difference in how your lungs function. However, in some types of PF, the scarring can get worse over time. Treatment for this type of PF aims to stop or slow down the scarring with medications, whilst also helping you manage your symptoms to ensure you feel as well as you can.

How common is IPF?

Although all types of Pulmonary Fibrosis are relatively rare, you are not alone. Each type of PF has specific information relating to prevalence. For IPF, there is a conservative estimate of approximately 1,250 people being diagnosed in Australia each year, however it is not known exactly how many people are currently living with the condition.

I embarked on significant research, and set about planning my own journey, rather than how IPF would determine my journey.

Bill Van Nierop, IPF patient Brisbane

Life with Pulmonary Fibrosis

Booklet

This booklet contains information for people living with Pulmonary Fibrosis (PF) and their carers including an overview of diagnosis, management and living well.

Idiopathic Pulmonary Fibrosis (IPF)

Fact sheet

The Idiopathic Pulmonary Fibrosis (IPF) fact sheet provides a brief overview of IPF, symptoms, causes, diagnosis, treatment and management.

Bill’s story

Idiopathic Pulmonary Fibrosis Interstitial Lung Disease Pulmonary Fibrosis

For Bill, research means more time to see his grandchildren grow. And research means hope … hope for greater understanding of lung disease, and of better medications to deal…

Information and support

Our Information and Support Centre team are here to assist you with your questions, provide general information and referral to support services. This free and confidential service is available Monday to Friday 8am – 4.30pm (AEST). Call 1800 654 301 or find out more, here.

PF research program

Lung Foundation Australia is committed to driving dedicated research that will help improve the health outcomes and quality of life for those affected by PF. Our research program includes a world renowned IPF registry, clinical trials group and a suite of IPF research awards and grants available to researchers and health professionals.

Find out more