John's story - Institute for Respiratory Health

John’s story

Wednesday, June 12, 2019 | Community

Hi, my name is John and I live with IPF, a life-threatening condition that has no cure. Seven years ago, I was diagnosed with idiopathic pulmonary fibrosis (IPF), a rare lung disease that causes irreversible scarring of the lungs and has a very low survival rate. It is estimated that 7,000 people are currently living with this disease in Australia.

John with his family

My discovery of the condition came after having a dry cough that wouldn’t go away. When I was first told I had IPF there was no referral to a specialist or discussion about the disease. It was only after discovering that my brother, who was seriously ill, had also been diagnosed with IPF that I realised the severity of the situation.

At first I was angry and anxious. Angry with the lack of knowledge of the condition and what to do about it, and anxious having seen my brother at the end stage of his life. I was very unsure of what sort of life expectancy I might have, and therefore assumed that death or disablement might be just around the corner.

Later, however, I realised that I would still be alive tomorrow, next month, and hopefully next year, and I could start to focus on the future.

I went to see a specialist, joined a clinical trial at the Institute for Respiratory Health and I found out what resources and support were available for patients like me. The medication I am now receiving is helping slow down the disease.

I discovered that lung disease is very much underfunded when compared to other more well-resourced diseases. Although much has been done there is still so much to do.

Whilst involved in the clinical trial, I was humbled by the generosity and selflessness shown by the staff at the Institute. I wanted to give something back so became a Lung Champion for the Institute.

Our researchers and clinicians want to find a cure to help people like John beat this disease and survive

We rely on the generosity of the WA community to help sustain our research and clinical trials.

Please donate today and 100% of your donation will go into research projects to help people like John. For example:

  • $50 assists in processing patient samples.
  • $100 will go towards the cost of laboratory research consumables like tubes and pipettes.
  • $200 is enough to pay for five hours of research assistant time in the laboratory.
  • $500 will go towards funding laboratory equipment.
Please donate to our life saving research