Six years ago, Mark Macduffie felt like he was on top of the world.
The Commonwealth Bank executive had a challenging job, had just completed his first marathon and was in the best shape of his adult life.
He had met his future wife and everything felt like it was falling into place.
Little did he know that his body had begun to attack itself on the inside and a mystery illness would soon rear its head, ravaging him to the point where he feared for his life.
Over the next few years, Mr Macduffie lost all of the hair on his body, developed facial paralysis, underwent spinal surgery and narrowly avoided suffering a heart attack, all because of something he couldn’t even see – mould.
Despite living in near new, or newly-renovated apartments across Sydney’s eastern suburbs, Mr Macduffie had somewhere along the way been exposed to an invisible toxic mould, but it would take him and his doctors five years to figure this out.
ALARMING SYMPTOMS BAFFLE DOCTORS
It was in 2012, when Mr Macduffie was 36, that he first noticed something was wrong. He had developed a bald spot on the back of his head.
“I didn’t really think too much of it at the time. But the hair loss started to accelerate to the point where, within six months, I was almost completely bald. So no eyebrows, no eyelashes, no hair anywhere,” he told Nine.com.au.
But his strange hair loss was soon the least of his worries.
“The symptoms progressed quite rapidly from there and got more and more alarming,” he said.
“I had extreme fatigue. So I would come home from a busy day at work at six o’clock and be asleep. I would be fundamentally just shattered at the weekends.”
“I had a myriad of other really unusual, unrelated symptoms. I woke up a couple of nights with facial paralysis and numbness down my left side. I couldn’t feel my arm, I couldn’t feel my face.
“I had to wake my wife up because I thought I was having a stroke. I got diagnosed with Bell’s palsy.”
“I also had inflamed joints. I went from doing marathons to not being able to walk more than a kilometre.”
Despite being sent to specialist after specialist, doctors were at a loss to explain what was happening to Mr Macduffie.
The only thing they could agree on was that his autoimmune system had somehow been triggered and was attacking his body from the inside.
“It was a really scary and confronting time for me and my family. There were a number of alarming test results that make you fear the worst. But we had no answers, so there was just a lot of frustration. I went to probably more than 15 different doctors and specialists in different fields,” Mr Macduffie said.
SPINAL SURGERY OFFERS FALSE HOPE
A breakthrough came in 2013, when MRIs showed up a blockage in Mr Macduffie’s spinal canal. The blockage was restricting blood flow to the left side of his brain and causing numbness down his left side.
Believing the blockage was the source of his extreme health problems, Mr Macduffie underwent spinal surgery to have it removed.
After the surgery Mr Macduffie said he felt an immediate improvement in his symptoms.
“It was like someone had turned the light on. I vividly remember waking up post-surgery. It was as if somebody had really turned up the frequency. I had clarity of thought. My face was no longer numb, I could talk clearly,” he said.
“We thought that was the end of it. I felt an immense sense of relief.”
But Mr Macduffie’s recovery was short-lived and it soon became apparent that the spinal blockage was a symptom, rather than the cause of his health woes.
Over the next few months, Mr Macduffie was hit with a brand new set of extreme symptoms, as his hormones started to go haywire.
“My testosterone levels were on the floor, a fraction of what they should be for a bloke my age. My estrogen levels were four or five times what they should be for a bloke my age. My doctor at the time reflected that it was like I was going through menopause,” he said.
With no answers as to why his body was seemingly falling apart, Mr Macduffie said he simply “ploughed on” and continued to work in his highly-demanding job as an executive director in Commonwealth Bank’s digital office.
But, in 2016, Mr Macduffie had a massive scare at work while in a meeting.
“I had a violent pain in my chest. I couldn’t get any breath, and the compression hit me really hard to the point where I grabbed my chest.
Having not told anyone at his work about his health problems because of his lack of diagnosis, Mr Macduffie said he immediately tried to play it down.
“I said something like, ‘let’s wind this up and pick it up tomorrow’. All the time thinking, ‘I’ve never felt anything like this. What the hell is it?'”
Mr Macduffie caught a taxi to St Vincent’s Hospital where doctors treated him for a suspected heart attack.
“It was really confronting. My wife and I obviously went through a really tough time that 24 hours or so. The great news is it wasn’t a full-blown heart attack but it was as close as you can get to one a catastrophic heart attack without having it,” he said.
AN ANSWER AT LAST
Mr Macduffie’s near miss would turn out to be a blessing in disguise as it led to his doctor ordering more tests which eventually showed up a link between his abnormal hormone levels and mould toxicity.
After further tests, Mr Macduffie was diagnosed with Chronic Inflammatory Response Syndrome (CIRS), otherwise known as toxic mould syndrome.
CIRS is thought to be caused by a build-up of biotoxins in the body from substances such as mould, leading to a range of symptoms affecting everything from brain function to respiratory problems.
It is thought about 25 percent of the population carry a gene that makes them susceptible to mould illnesses, which is then triggered by a period of exposure to mould.
CIRS isn’t a condition that’s recognised by the general medical community and the research is still hotly-contested.
However, doctors specialising in the field say mould-related illnesses are far more common than most people, including other medical professionals, realise, and could affect up to tens of thousands.
Mr Macduffie, who now lives in Byron Bay, said since his diagnosis he had been on a strict diet and treatment regime.
“The impact has been slow and steady in the right direction. I’m starting to get my energy back and my hair is starting to grow back. Not that that is important anymore, I’ve long since given up with what I look like,” he said.
Mr MacDuffie said he was also grateful for the support of his employers at Commonwealth Bank.
“Without the flexibility and support provided by my employers I would simply not be able to focus on fighting the illness,” he said.
A HIDDEN DANGER
Although he was 100 percent convinced by his diagnosis, Mr Macduffie it was still hard for him to fathom how something as invisible as mould had been so catastrophic to his health.
“In all the places we lived in in Eastern Sydney there was no visible signs of mould at all. Some of the houses were brand new renovations or builds. There was absolutely no sign of damp or mould damage. It’s an invisible bacteria,” he said.
“It would never been on my mind that mould could have been the root cause of my illness until I got so violently sick.”
Wes Black microbiologist and mould expert told Nine.com.au that there was a common misconception that the most dangerous type of mould was the so-called “black mould”.
“One of the biggest myths is that black mould is a ‘thing’. There are a handful of different moulds that look black. But the majority of moulds are really not visible to the naked eye,” he said.
Likewise, another myth that needed to be busted was that it was only old homes that had mould problems.
In fact, a lot of new homes, particularly apartments which were designed to be energy-efficient, were particularly bad for mould, he said.
“There seems to be increasing numbers of new houses and apartments that do not have nearly enough engineering controls, such as subfloor ventilation, to keep them dry, or even just ordinary ventilation in the living area - because people are trying to maximise energy efficiency.”
“We used to get plenty of energy inefficient homes but with plenty of accidental ventilation. Now we are blocking things up, making them more energy efficient, but without consideration for other sources of ventilation. This seems to be a real problem with new apartments.”
MORE COMMON THAN WE THINK
Central Coast doctor Christabelle Yeoh said a lack of awareness among doctors about the effects of mould meant patients often went years without discovering the cause of their illness.
“Depending on what symptoms a patient presents they might be diagnosed with asthma, or a quite common one is skin problems, rashes or dermatitis,” Dr Yeoh, who is also president of the Australasian College of Nutritional and Environmental Medicine, said.
“Chronic fatigue is another very classic diagnosis. Where the cause isn’t found they might be given antidepressants. Or they might just be told to exercise more and get on with their life better but they try yet they can’t get over the hump.”
“Another common thing is where people’s brains just don’t work well on a functional level so they will think that they are even getting early dementia.”
“I would certainly say it’s a hidden problem. It’s happening much more than we expect or know, and it’s definitely devastating and debilitating for the people who get it,” she said.
Last month, NSW Liberal MP Lucy Wicks, who has herself been diagnosed with CIRS, called for a national inquiry into mould-related illnesses.
The national inquiry, which Ms Wicks said had the early support of Health Minister Greg Hunt and Prime Minister Malcolm Turnbull, would look into the building codes around mould and water damage as well as the need for national guidelines for mould remediation.
Guidelines for GPs about the issue was also urgently needed, Ms Wicks said.
Mr Macduffie said a greater awareness among doctors, GPs in particular, about mould would have made his difficult journey much easier.
“Talking to medical professionals, sometimes they dismiss it out of hand. They are still basing their knowledge on research when they qualified 10 years ago,” he said.
“I would completely support a national enquiry into mould-related illnesses. I believe there are probably thousands of people out there that don’t know that they’ve got it.”
First Appeared on 9News
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