“Research means earlier diagnosis, possible treatment, less progression of the disease and a better quality of life, which is everything. It really is the meaning of life or death to some people. That little bit extra research, that little bit extra funding, that one extra researcher who wants to make a difference. It’s just absolutely life-changing.”
For thousands of Australians like Noni, research is hope. The bubbling 31-year-old, who is living with Pulmonary Fibrosis, a silent and devastating lung disease, is aspiring to walk as many of the Canberra National Park mountain peaks as she can in one day. Noni is sharing her inspiring journey along the way and raising funds to help give hope to others.
Noni dreams of starting a family. The vivacious and witty fitness enthusiast loves nothing more than exploring the great outdoors and being surrounded by her beloved fur babies.
In 2018, as she decorated for her husband’s birthday celebrations, Noni struggled to blow up the balloons. For months, she had been unable to shake a severe cold and now, she couldn’t find the strength in her lungs to fill a balloon. After a series of invasive tests, specialists discovered scarring on Noni’s lungs.
“I was told because I’m young and relatively okay, the unexplained scarring would have to get worse before they could do anything.”
The scarring is known as Pulmonary Fibrosis, a severe and debilitating lung disease that typically affects middle aged and older people. So, when a fit and healthy woman in her 20s developed tell-tale symptoms, doctors were bewildered.
“It’s terrifying and it feels so hopeless because I don’t know what’s going to happen. I’ve had doctors tell me that if I don’t do something now, I’m not going to be here in a year. I’m 31 now, I’ve got a husband, I want to have a family and I’ve been told that that’s pretty much not an option for me.”
“When I have particularly hard days, I’m in extreme amounts of pain that I can’t even really describe. I can’t finish a sentence or do simple thing like make myself a coffee without having to sit down.”
“They’re waiting for severe progression before they can find a way to treat it. I’m on supplementary oxygen now and that helps me a lot but nobody can really tell me why. As anybody who has been touched by this illness would know, you can google as much as you want but it’s all just a wild goose chase.”
In recent years, Australian-based research into this complex disease has provided significant advances in treatments which are helping to slow disease progression – providing hope that never existed before. But there are still so many unanswered questions for people like Noni.
Thanks to the incredible support of major donors, philanthropy and the community, Lung Foundation Australia support the best and brightest researchers to drive discoveries that will change lives.
“What can I say to these generous donors who believe in the cause that is killing me? There are no words.”