Since being diagnosed with primary ciliary dyskinesia (PCD) at the age of 11, Sunbury resident Catherine Kruljac has come to intimately understand the debilitating nature of the condition.
“It’s very similar to cystic fibrosis, it affects the sinuses and their ability to move properly so you get a build up of mucus in your lungs,” she said.
“PCD sufferers battle with daily chest physiotherapy, taking medications and recurrent chest infections that require hospital visits to have IV medications to get them back to their baseline every day.
“Some people have to have regular antibiotics. For kids it can be particularly difficult to navigate, because when you’re very young it’s hard to take instruction to cough up phlegm.”
Ms Kruljac said another major issue facing PCD sufferers is a basic lack of awareness for how to treat the condition.
“There is limited education in Australia, it can be misdiagnosed or not treated properly,” she said.
In 2013, Ms Kruljac founded the PCD Foundation in order to provide support for the more than 600 known sufferers across Australia.
Ms Kruljac said she hopes a standard of care can be established in Australia, to create a consensus view of the best treatment of PCD.
October is PCD awareness month and this year the community is encouraged to donate or participate in the PCD Foundation’s 55 kilometre challenge.
For more information, visit: www.pcdaustralia.org.au
https://55kmriderunwalkforpcdaustralia.raisely.com/
