Only 600 people in Australia are sufferers of a rare lung disease called Primary Ciliary Dyskinesia (PCD), and PCD Australia founder Catherine Kruljac from Sunbury is one of them.
She said there’s probably more though, as people are often not diagnosed until later in life – that’s why PCD Awareness Month is happening worldwide in October.
“It’s about creating awareness among the general public and local doctors that this condition exists,” Ms Kruljac said.
“People shouldn’t have to be walking around with a chronic illness and diagnosed late in their lives because of the damage it does to their lungs.”
As part of the campaign, Ms Kruljac is asking locals to get involved with a 55 kilometre Ride/Run/Walk through the month of October, to raise money virtually for research and support for sufferers.
“My lung function is at 33 per cent just due to damage in the airways from repeated chest infections and that’s not reversible,” she said.
“There’s no known cure at the moment, there are some studies that have happened overseas in regards to some drugs that could be a game changer, but we’ll know in the future.”
She wants to see a standard of care for the disease and for more doctors to know what they are looking for.
“Someone can look healthy, but on the inside could be struggling. I look perfectly fit, but if I walk up a flight of stairs, I have to stand for a couple of minutes to get my breath back,” she said.
“Organisations like ours are about finding support structures for everybody and giving people help if they need that financial help.”
Details: pcdau.raisely.com.
Elsie Lange
