No symptoms, no warning – how a Perth woman discovered she had IPF

September marks Pulmonary Fibrosis Awareness Month, a time to raise awareness about a group of lung diseases that cause scarring of the lungs and make it harder to breathe.

Pulmonary Fibrosis (PF) includes a range of conditions such as Idiopathic Pulmonary Fibrosis (IPF), autoimmune-related PF, occupational lung disease and more. The scarring is irreversible and can worsen over time making everyday activities a struggle.

For many, the symptoms creep in slowly—shortness of breath, a dry cough, fatigue—and are often mistaken for ageing or other conditions. For others, like Viola Bennett, 66, from Ballajura in Perth, the disease arrived unexpectedly.

Viola had no symptoms at all. She discovered she had IPF in 2020 after going in for an unrelated surgical procedure. Her doctor spotted lung scarring on a scan and ordered more tests. It was only then that she found out she had the disease.

“I didn’t have any of the usual symptoms like coughing and even now I only have a bit of breathlessness when walking long distances or walking up a hill – otherwise I had no idea I had the disease at all.”

Viola is now part of a clinical trial at the Institute for Respiratory Health, Australia’s largest provider of lung disease clinical trials. For the past year she’s been taking the trial drug BMS-986278 . In September she’ll find out whether she has been on the active medication or a placebo. If she’s been on the real drug, she’ll have the option to stay on it for another year and possibly up to five years.

“Clinical trials offer hope not just to those of us involved but to the whole community,” Viola said. “They give us a chance to change the future of this disease. Even if I get the placebo my participation still counts. It helps doctors find out what works and what doesn’t and I am helping others with lung disease to hopefully find a cure one day.”

Associate Professor Vidya Navaratnam, from the Institute for Respiratory Health, said clinical trials are key to better outcomes. “Clinical trials are one of the most powerful tools we have to improve outcomes for people living with lung disease. The Institute is the largest provider of clinical trials for people with lung conditions in Australia.

“If you have pulmonary fibrosis, joining a trial could improve your quality of life and help researchers discover better treatments faster.”

This Pulmonary Fibrosis Awareness Month, the Institute encourages people to talk to their doctor if they notice changes in their breathing. Early diagnosis and clinical trials can offer hope and make a real difference.

To find out more about clinical trials for lung disease visit respclinicaltrials.org.au

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