In 2011, following the deadly and devastating floods in Brisbane, 40-year-old Sean Di Lizio volunteered in the massive clean-up effort to help those who had lost everything.
“A lot of people went and volunteered in the clean-up following that. So I went out with a friend and we're volunteering in one of the worst hit suburbs,” he told The Feed.
But immediately after, he fell extremely ill.
“I had a number of symptoms that started right then.”
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“One of the worst was probably chronic insomnia that started from that very night. I very much struggled every single night to fall asleep and to get a sufficient amount of sleep for about the following nine years.”
Four years later, Sean and his wife Joanne, bought their dream home in Brisbane’s west.
“We thought that would be the house our kids grew up in,” he said..”
During this time Sean was still struggling with the symptoms he’d contracted during the floods.
“I can remember conversations with my wife, where I was just talking about the fact that my anxiety had just gone through the roof from that point onwards, but we still hadn't made any association as to what could be causing it.”
Shortly after they’d moved in, a contractor accidentally cracked some tiles on the roof, creating a leak when it rained.
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“Basically less than a week after that was when not only my psychological symptoms, but my entire body just started to seem to fall apart.”
Sean began experiencing several differing symptoms ranging from rashes across his body to a severe headache that he claims remained constant for four weeks straight.
“I started to get a variety of physical symptoms as well,” he said.
“It seemed like there was this constant tremor in my body. It got to the point where I simply couldn't hand-write anymore.”
The symptoms escalated so severely, Sean had lost all recollection of his children.
“At one point I told the doctor, I couldn't remember a single memory of my children from their entire lives from the past eight years at that time,” he said.
“I wasn't the same person that my wife had married. You know, I wasn't any kind of happy or loving personality. I wasn't the father that my kids were used to either.”
The De Lizio family on holiday in 2015 Source: Supplied
Before falling ill, Sean was a healthy, happy dad. He loved to cycle, meditate, spend time with his kids and family and was passionate about his work in academia.
But since the leak, Sean’s symptoms continued to escalate for several years after. He saw dozens of doctors and conducted dozens of tests, but no one was able to diagnose what was making him so sick.
It was only when Sean read a book while on holiday with his family in 2019 that he was introduced to Chronic Inflammatory Response Syndrome (CIRS), a disease contracted from mould.
CIRS is “a condition which affects the whole body when certain individuals have been exposed to a water-damaged building,” according to General Practitioner Dr Sandeep Gupta.
“t's not just a runny nose or sore throat or some of those localized symptoms that most people associate with mould related allergy, but it's something that can affect any part of the body,” Dr Gupta said.
“And it's often quite debilitating.”
After conducting in-depth research, Sean managed to find a doctor who specialises in CIRS and was diagnosed with the disease.
CIRS is currently not recognised as a mould related disease in Australia. In 2018, a Public Inquiry into Biotoxin Related Illnesses found that there was insufficient scientific evidence to prove that mould can lead to CIRS.
“CIRS is not an accepted medical complaint in Australia from both the Department of Health nor the Australian College of General Practitioners recognise it as a distinct syndrome,” Toxicologist Dr Ian Musgrave said.
However, Dr Sandeep believes it is because it is a fairly new disease, medical practitioners in Australia are yet to be familiarised with the disease.
“It's a relatively new condition. It still hasn't hit the medical schools as yet. And it hasn't, hasn't really hit mainstream medical education,” she said.
Dr Musgrave said it’s too risky to diagnose a disease which has not been scientifically recognised.
“Misdiagnosis of any sort worries me, especially in a case where you have vulnerable people who are desperate for a solution,” she said.
“it’s entirely possible that they may spend a lot of money chasing a solution which may not be related to their underlying disease.”
Today, after more than a year of treatment and several life changes, including moving homes, Sean has almost completely recovered.
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“I'm one of the lucky ones in how well I've recovered,” Sean said.
“You know, one of the things about this illness is that you get yourself back, you get to enjoy life again.”
The Feed reached out to the Department of Health but did not receive a response in time.
