When Angela Mallis first held her newborn baby girl in her arms 17 years ago maternal instinct told her there was something wrong.
After vigorous testing during the first six months of her life, Priscilla was eventually diagnosed with Cystic Fibrosis: the most commonly inherited, life-shortening condition affecting Australians.
Yet Angela, let alone her family and friends, had never heard of it. Cystic Fibrosis, or CF as it is commonly referred, is a degenerate disease of the body’s secretory glands causing the production of abnormally thick mucus that congests the lungs resulting in chronic infections and digestive problems.
“Every day is a struggle for Priscilla to take up to a dozen tablets and sustain the energy necessary to lead a normal life,” Angela said.
However, she is determined not to let the fear of her daughter’s condition worsening keep her from allowing Priscilla to complete her bucket-list this year.
Up until now, existing treatments have only attempted to treat secondary manifestations of the disease, however a promising new drug claims to target the underlying ion-transport defect in CF sufferers preventing further organ damage.
Denufosol is currently undergoing its final trial stage in the US and has seen patients experience a significant decrease in mucus accumulation and improved lung function performance within just a few months of treatment.
Angela, whose life was more recently shaken by her eldest son’s battle with lung cancer, is elated by the prospects of the new drug but remains disheartened by lack of CF awareness.
“Deterioration is internal and so it’s hard for people to see how truly debilitating CF is,” she said, adding “sometimes I feel like if we shaved all their heads maybe then they’d get more attention.”
CEO of Victoria’s Cystic Fibrosis Foundation, Stephen Murby, said that despite his foundation’s efforts over 98 percent of people discover they are carriers after the diagnosis of their newborn child. “Every four days a child is born with CF in Australia
