Noni wants to breathe new life into lung disease awareness

You finally have space for four horses, and you've started a dog grooming business.

Life is good.

This was how Noni Strawbridge started 2018.

Apart from a lingering cold that just wouldn't go away.

Coughing all night, getting breathless, feeling exhausted. For someone who was hitting the gym six days a week, this was strange, to say the least.

It was when she was preparing for her husband's 30^th birthday that she really started to worry.

"I was blowing up balloons, and couldn't get one even half-done," she said.

She ended up in a Sydney hospital, where the entire respiratory team came in to tell her that they didn't know what was causing it, and she would just have to get worse until they could work it out.

"A month later I had bronchoscopy - they put camera down into my lungs, washed them out and took a biopsy," said Noni.

"It confirmed that I had scarring in my lungs. I don't have a primary diagnosis though, because they don't know what caused it."

READ ALSO:

Bundanoon Scarecrow competition entries now open

Police seek information after Highland cow shot at Boxers Creek

The scarring is known as pulmonary fibrosis, a severe and debilitating lung disease that typically affects middle aged and older people.

Noni had to give up her fledging business and now, two and a half years later, she sometimes can't find the breath to finish a sentence.

"I can't work, I'm on a disability pension," she said.

"I'm very thankful that I've had a lot of help from a lot of organisations in Goulburn, especially the Disability Trust."

Noni has struggled to get back to a semblance of normal life, but that has declined.

"I'm on oxygen on for exertion and at night," she said.

"Sometimes when I walk down the street people ask me if I was a smoker, which I wasn't, and think it's my fault.

"I'm now just trying to bring light to something that even I had never heard of before my diagnosis."

September is Pulmonary Fibrosis Awareness Month.

To mark the occasion, Lung Foundation Australia announced this week that they will provide the nation's single biggest philanthropic investment in dedicated pulmonary fibrosis research to the Centre of Research Excellence in Pulmonary Fibrosis, based in Royal Prince Alfred Hospital in Camperdown.

This $1.1 million investment will support research tackling the debilitating and incurable lung disease that impacts on thousands of Australians each year.

Currently, the survival rates for pulmonary fibrosis can be as low as some of the most devastating cancers and with emerging research indicating post-viral lung fibrosis in COVID-19 patients, experts are preparing for what could be a significant wave of pulmonary fibrosis diagnoses over coming years.

Noni said that awareness and research are the two key factors for changing the three to five year prognosis for the disease.

"A lot of people are wrongly diagnosed, mis-diagnosed or undiagnosed, so it's hard even to know how many people have it," she said.

"Lung health in general is vastly under-funded - people think it won't affect them, that it mostly affects older people, and there's a kind of a taboo around talking about it because people think its self-inflicted due to smoking.

"Even some doctors really unfairly judge sufferers - the stigma around it is terrible."

After years of being put in the "too hard basket", Noni is hoping to the disease won't be a death sentence for much longer.