Overview

Idiopathic Pulmonary Fibrosis

Being told you or someone you love has Idiopathic Pulmonary Fibrosis can be a very overwhelming and frightening experience. Idiopathic Pulmonary Fibrosis is a very complex disease and very little is known about it, so the medical information you receive may be limited or difficult to understand at times. There are also many decisions to be made including treatment as well as emotional and practical concerns. It is important to remember that you are not alone and you do not have to take this journey by yourself.

What is Idiopathic Pulmonary Fibrosis?

Idiopathic Pulmonary Fibrosis (IPF) is a type of rare lung disease that causes the tissue 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.

What can I expect to experience?

It is important to know that each person experiences IPF differently. Some people can remain stable for many years; others may decline rapidly, and others have a series of distinct ‘steps’ of suddenly feeling worse, followed by a period where their symptoms become stable. As the scarring is progressive and irreversible, you will find your health declines over time.

How common is IPF?

Although IPF is rare, you are not alone. In Australia, there is a conservative estimate of approximately 1,250 people being diagnosed with IPF each year, however currently it is not known exactly how many people are affected.

I got to the point in my IPF diagnosis where the only option was to accept it, and then seek all the information I could to develop a plan to tackle this imposition on my life.

Bill Van Nierop, IPF patient Brisbane

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 email us below.
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Australian Idiopathic Pulmonary Fibrosis Registry

Our Australian Idiopathic Pulmonary Fibrosis (IPF) Registry is a unique research platform that collects information on patients living with IPF to better understand this rare and complex disease.

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