When Hannah Cozens and Darren McGuinness started their family, they anticipated the sleepless nights and tears.
But in the final year of their tenancy at a rental home in regional Victoria, their lives quickly spiralled into a "constant cycle" of illness and anxiety.
"I think we — the kids, and Darren and I — would've been sick from six to seven months out of that year," Ms Cozens said.
The family members experienced colds that would take weeks to shift, respiratory illnesses, cyclical fevers, skin conditions, and bacterial infections.
Ms Cozens said the intensity of her daughter's cough would sometimes lead to her vomiting.
"They started talking about … childhood cancers … and rare autoimmune [disorders]. You know, you hope you're not going to be that person, but you can be."
In 2021, Luella's new paediatrician queried whether unseen black mould might be contributing to their illnesses.
"After reading the history of Luella, the first thing he said to me was, 'What's your house like? What's the environment like?'" Ms Cozens said.
Low understanding of mould-related illness
Mould is a fungus that creates a biotoxin — a chemical by-product — called mycotoxin.
According to a 2018 parliamentary inquiry into biotoxin-related illness in Australia, mould is a naturally occurring fungi found in both indoor and outdoor environments.
In the report, it was agreed exposure to damp environments and biotoxins might lead to adverse health issues, including headaches, sinus illnesses and weakened immune systems.
The World Health Organization estimates indoor dampness, which is a major factor in the growth of moulds in the home, may affect between 10 and 50 per cent of indoor settings across Australia.
While it is acknowledged exposure to mycotoxins causes illness, the science is not settled.
Graeme Edwards is a consultant physician in occupational and environmental medicine with the Royal Australian College of Practitioners. He acted as a representative of the college during the 2018 inquiry.
"The position of the college is that biotoxins do cause problems," Dr Edwards said.
Within the report that was later given to the biotoxin inquiry, chair Trent Zimmermann noted a "consensus" of people exposed to biotoxins who suffered "from a range of complex symptoms that are debilitating, difficult to diagnose, and treat effectively".
Dr Edwards reiterated that while not enough was known in the medical world about biotoxin illness, this did not mean it did not exist.
Australia-first research begins this month
The 2018 inquiry recommended "the Department of Health … develop clinical guidelines for general practitioners for the diagnosis, treatment and management" of suspected biotoxin illnesses, including chronic inflammatory respiratory syndrome (CIRS).
The Department of Health and Aged Care said it had commissioned the development of an "evidence-based clinical guidance" to support GPs in the diagnosis of biotoxin-related illness.
"Given the recent floods in different parts of Australia and concerns for biotoxin-related illnesses, the department is prioritising this project," it said in a statement to the ABC.
"The review and clinical guidance are expected to be completed by the end of 2022."
Macquarie University will begin an Australian-first research project this month into mould-related illness after it secured funding from the National Health and Medical Research Council.
The project will research inflammatory responses and brain imaging from those experiencing CIRS symptoms.
Participants from across Australia will undergo blood and urine testing in addition to brain scans. The samples will be cross-referenced with environmental testing in their homes.
The aim of the research is to find strong diagnostic parameters for physicians in the future.
"We are trying to set up the parameters of the diagnostic and the treatment of the response.
"Once we set up these parameters for the first three years, after that we would like to do clinical trials."
Dr Ahn said because each patient and each blood sample reflected different levels of mould exposure and symptoms, the research needed to be comprehensive.
Renters' increasing concern over moulds
The study could make a world of difference to families experiencing illness like those of Darren McGuinness and Hannah Cozens and their family.
It may also inform the future of legislation for renters across the country.
Renters advocacy group Tenants Victoria said one in every 10 phone calls it received was from a tenant expressing concern about black mould in their home.
"When renters are contacting us, usually they've already contacted their landlords about mould," Georga Wootton, a lawyer with Tenants Victoria, said.
Moulds are not always visible in the home but can sometimes be identified by a musty odour.
But across the country, record-low vacancy rates are leaving tenants with few options — especially if they live regionally.
In Victoria, the regional vacancy rate in December 2021 was just 1.4 per cent.
In New South Wales, regional renters are facing historical-low vacancy rates of less than 1 per cent, up to 1.3 per cent.
The Tenants' Union of NSW said market pressures were leaving vulnerable people in mouldy homes, and without the option to move.
Ms Wootton urged Victorian tenants who were concerned about black mould to raise it with the state's advocacy group.
"In Victoria, mould is treated as an urgent repair, which means if tenants aren't getting results by contacting their agents and landlords, they can make an application to the Victorian Civil and Administrative Tribunal."
'We are a lot healthier now'
Ms Cozens said suspicions there was black mould in the house were confirmed as the family prepared to move to a new home and organised a builder to look at a leaky bathroom.
"He said he found the most black mould he'd ever seen in a house," Ms Cozens said.
Mr McGuinness said the family had been faring better since they moved out of their rental in January this year.
"I haven't had anything to do with the kidneys in the six months that we have been here," Mr McGuinness said.
"I've noticed we are a lot healthier now … I have a lot more energy now … I don't need to have a nap every day," Ms Cozens added.
Are you a renter or a homeowner with a mould issue? We want to hear from you.
