My CIRS Story

This is my CIRS story in full. I’m forewarning you – this is long. And probably only interesting in this level of detail to others who have experienced or are experiencing similar. I was made very sick by a home we purchased in 2021 and received a CIRS diagnosis in 2022. But now that I understand more about my genetic susceptibility to toxic mould and how much exposure I have previously had to it, I can see that this story started much earlier for me. I hope by relaying it here, I can provide hope to anyone who feels there’s no end in sight. I’ve been there. 

The last time I truly felt healthy was at age 21. I remember feeling unstoppable—able to devour any food, thrive on minimal sleep, and excel academically and athletically. I had probably never thought about 'gut' and 'health' in the same sentence. It was April 2014, and I had decided to change my path and degree, which meant moving to Sydney's Inner West to attend Sydney Uni. Like everyone else at the time, I found a new flatmate and a new home on Gumtree and quickly settled in with my little dog. My only concern when choosing a place to live back then was the cost and whether the flatmate seemed fun. So, despite the musty smell that lingered in the air even when it hadn't rained for weeks, the 25-year-old carpet hanging on by a thread, and the fact that all our furniture had been scavenged from the streets....it was home, and I loved it.

 A few months later, the bloating started. Bloating so bad that I looked 6 months pregnant after certain foods or drinks that I couldn't predict. I was in agony every time it happened, and I started missing nights out or having to go home early. I took all of my exams at uni clutching my stomach in pain. Shortly after, the neurological symptoms began. Forgetting what I was saying mid-sentence. Often. Too often for a 22-year-old. I remember musing to my housemate over breakfast one morning as I forgot my train of thought again, "Hmmm, weird, that keeps happening. I probably need some multivitamins or something!". I was also getting sick with colds and flu regularly. My dad started marking it on a calendar every time I said I was ill again to make a point of it to me. I had never had any health issues prior, so we put it down to the typical (unhealthy) lifestyle of a uni student.

Around this time, I mentioned to a doctor that I had started having heart palpitations and asked if that was normal. 

"Yep!" she said, "Don't worry about it!". 

"Ok, and how about me getting these gut issues out of nowhere?"

"Yep! Normal, nothing you can do about it!". 

I began to doubt whether my doctor was taking my issues seriously enough, so I started seeing other doctors—doctor shopping—a far less enjoyable experience than actual shopping. My stomach troubles were so bad that I felt like I was single-handedly keeping Chemist Warehouse in business. I was convinced there had to be a root cause triggering all of this, and I needed to find a doctor who could offer more than just probiotics. 

During this period, I continued on at university and generally felt well enough and happy, but I couldn't shake the feeling that there was an unresolved health issue lurking beneath the surface. I’d also started experiencing a tiny bit of brain fog occasionally but didn’t have the words to describe it. After about a year and a half, I moved to another place in the Inner West, a converted warehouse apartment that felt fancy. It had water pouring through the light in the kitchen every time it rained, a ceiling and floor leak in the bathroom, and a bedroom carpet that was sodden year round...but, again, it was home, and I loved it. I'd email the landlord about the leaks, he'd tell me to go away, no biggie. 

My stomach issues somehow got worse and the person I lived with started feeling really off within days of moving in. As you read this, you might be wondering how I didn't realise sooner that my illness was an environmental one. But back then, I genuinely believed that health was only influenced by diet, exercise, and vitamins. No one had ever told me that a building could be "sick" and actually make people ill. Even now, most people would struggle to be convinced that their home could be making them sick. And plus - there was no visible mould, ever.

I saw over 15 GPs for my stomach issues before I reached out to the Centre for Digestive Diseases and began scheduling colonoscopies, endoscopies, and any other -oscopies I could get. Everything was normal, but I had a parasite called Dientamoeba Fragilis. It felt like a breakthrough moment. I doubt anyone has ever celebrated receiving news of having a parasite as enthusiastically as I did. Finally, I had an explanation. I was prescribed six weeks of heavy-duty antibiotics—enough to knock out a horse, they said—and was assured I'd be cured at the end. 

...Except I wasn't. 

Soon after, I learned that D. Fragilis doesn't even require treatment for someone with normal gut health. I started down the path of testing food allergies and intolerances. It’s all about diet and exercise, right? And I was doing the exercise bit. $1000 of breath testing later, I discovered I had developed a fructose intolerance. Fructose is a fruit sugar in basically every meal you can conceive of and anything that tastes nice. But by cutting fructose out, which restricted my diet DRASTICALLY, things seemed more manageable. I couldn't quite understand how I had suddenly become intolerant to a food group that I had eaten my entire life, but convinced myself that garlic and onions weren't that nice anyway (sidenote: they are). 

I was approaching my last year of uni and moved into another sharehouse. Sure, it smelled mustier than a grandma’s house in a time capsule, but... we probably don't need to do this again. I was 24. My new hobby became "Stay up all night long and google why you're having 100+ muscle twitches a day and can't remember anything". I'm an avid reader, and I remember reading books and then writing my own Cliff notes at the end because I knew I'd forget the information - which defeats the purpose of reading. 

I visited another doctor. I was genuinely starting to feel scared. I took the day off uni and asked one of my parents to come along. 

Doctor: "Sounds like you've got anxiety". 

Me: "No, I just have the muscle twitches."

Doctor: "It's probably because you're nervous". 

I knew that something was wrong, but I kept reaching dead ends. I was generally happy and, gratefully, I have never struggled with anxiety or poor mental health. So I just hoped that when I finally figured out what was wrong, it wouldn't be "too terrible." In hindsight, and as an inspector now, I’m quite sure that the home I was living in was generally water-damaged, but also that the bathroom adjoining my bedroom was leaking beneath the old carpet where my bed was positioned. 

In 2018, I was 25 and graduating from uni. I moved to Beijing for 6 months. I had previously lived there for a year at 18 and went back to keep studying Mandarin. I moved into a tiny single dormitory at a university campus. I was so happy to be there, and my little sister had come along this time too. I had lived at my parents place for a few months to save before I left, and I was feeling great - much better than usual.

Then, in Beijing, I started to feel terrible again. I needed to nap every afternoon before I could go to work as an English teacher. I woke up with all of my joints aching (which was new) and then my muscles twitched all day long. A lymph node on my neck swelled so much that it never ultimately returned to normal size.

Midway through, my now-husband, Conor, visited me and, upon his arrival, asked, "Are you worried about all that mould over the ceiling?". Now, my husband is Irish, and Irish people know a thing or two about damp buildings. But I'm Australian, so I said: 

a) "Isn't that just teeny little bits of paint?"

and then

b) "Nah, she'll be right, mate." 

A few weeks later, when he left, I used a VPN to Google: "Can mould make you sick?".

"Nup", Google replied, 

"Only if you've got a mould allergy". 

I pushed back, "Can mould make your joints hurt?". 

"Nup", Google wrote, "Not a chance."

My story really could have ended there. If the information had been available and the health effects of mould had been promoted beyond just allergies, I could have recognised the problem. I was staring DIRECTLY AT THE PROBLEM. I could have left the mouldy environment, avoided any others, taken medication for the existing mould colonisation in my body, and received a diagnosis five years sooner than I did.

Instead, I did some more doctor shopping in Beijing. 

Whilst I was there, my nana was diagnosed with Motor Neurone Disease. I was devastated. And at the same time, I began to seriously worry that I might have the same illness. I had spent years researching symptoms that seemed to match up. I couldn't say anything to anyone because the focus rightfully needed to be on supporting my nana, and outwardly, I looked perfectly bloody fine. So I had my dodgy lymphnode scanned and my blood tested and kept quiet. But I decided to cut my time in Beijing short by six weeks. Deep down, I knew that something was not right, regardless of what the tests showed.

When I got back home, I started splitting my time between my parents' place and Conor's parents' place. The symptoms all but disappeared. I was still having some mild muscle twitching a few times a day but otherwise assumed that being back home, 'eating healthy food again', and getting some exercise was all that was needed. A dose of chicken soup for the soul. But life is not usually that simple. 

Within about a year, having nearly forgotten my earlier health woes and continuing on with a (tragic) fructose-free diet, I moved into a townhouse owned by Conor, which had experienced some water damage in the past. The AC we used every night hadn't been cleaned (ever). And around the same time, a hidden leak developed in the ceiling of one of the rooms I was sleeping in. I started having some aches and pains and poorer concentration. My right hip ached badly for no reason I could understand. I was wearing a strap around it 24hrs a day and seeing different physios. Then, my workplace relocated to a new office that had mould issues. Understandably, things got worse from there.

 I was diagnosed with what was believed to be RSI (Repetitive Strain Injury) or Thoracic Outlet Syndrome in both arms, attributed to my extensive typing duties at work, taking lengthy statements and interviews in relation to investigating dog attacks. I had to stop using a computer entirely because of the pain. I had every ultrasound, MRI, nerve conduction test, acupuncture session, remedial massage, physio session known to man done on those arms and nothing moved the needle. Everything was “normal”. “Well, I can put up with it”, I thought and added it to the growing list of symptoms I was tolerating each day. In that time, Covid hit. My husband and I made the most of the lockdowns and got engaged, married, then pregnant and bought a house within about 8 months. My arms burned with nerve pain on my wedding day. I felt sick at both of the hotels we had chosen to stay on our honeymoon, but I was happy. And happiness was good enough. I had married my best friend. 

In 2021, we moved into our new home, and I was around 6 months pregnant—feeling surprisingly great. It turns out that Chronic Inflammatory Response Syndrome (CIRS) significantly lowers Melanocyte Stimulating Hormone (MSH), contributing to many symptoms. However, during pregnancy, MSH levels naturally increase, leading many women with CIRS to experience symptom relief during this time. We were in the house of our dreams! I mean, the price was oddly low, but it had been renovated beautifully by a couple of house flippers!?

A few months after my son was born in September 2021, with the wonderful MSH all but departed, many of my symptoms gradually resurfaced. I was the happiest I'd ever been to have become a mum, but I knew I needed to start paying attention to my health symptoms again. And besides, it's tough to hold a baby when your arms feel like they’re on fire. 

The brain fog slowly started to creep in. And then suddenly, it was there all the time. Often flaring up to the point of complete debilitation, causing me to sometimes stutter and struggle to form coherent thoughts. Honestly, it’s hard to explain brain fog (which is essentially neuroinflammation) to someone who hasn’t experienced it, but imagine feeling like you’ve had too many glasses of wine, and it's not a Saturday night, it’s 10 a.m. on a Monday morning and you're frightened. My thoughts were muddled, words escaped me, and recounting a simple story felt impossible. ”I’ll tell you later” became my go-to. I felt disconnected, unable to maintain eye contact or engage fully in conversations with friends. Often, I worried that I wouldn’t have reflexes quick enough to protect my son if he needed me. As so many with CIRS will describe, I started to feel like a prisoner in my own body. 

My husband and I chalked it up to general tiredness from caring for a baby who didn’t sleep well, and these annoying gut issues. Plus, I was 30 now —maybe it was just a part of ageing, right? I started to feel like I was losing my personality. Like my IQ had been halved. Thankfully, that's not something a 1-year-old will notice, but god forbid asking me to remember a 4-digit code. I cried to my husband one night that my “gut issues” were getting so bad along with the brain fog that I felt like I couldn't connect with friends and family properly. By that stage, he was used to me calling him and saying things like "Hey, I've got brain fog again, I'm lost and can't find the car - can you help me?". We'd FaceTime, and he'd help me get through the confusion. More and more, the major brain fog hits would come with a feeling of being really tired, and really flat. 

By the time my son was 15 months old, he was a beautiful, happy baby but was plagued by a host of "gut issues" himself. He reacted to numerous foods, developed daily hives and rashes on his face for a whole year, suffered from chronic sleep disturbances, terrible cradle cap and frequently vomited. I believed I had passed on my own gut issues to him and felt terrible about it. Although doctors had assured me it was “just teething”, I wasn’t convinced and went overboard to ensure his diet was 100% perfect. And I continued to breastfeed him through the agony of the chronically inflamed milk ducts that no one could provide an answer for. By this stage, I had subsisted primarily on a carnivore diet for around a year because consuming anything else would trigger terrible brain fog, bloating, and pain, and I was worried that my son might be reacting to various food proteins in my milk. But it didn’t make a difference for him.

I started googling relentlessly for a doctor who would look outside the square and do testing for things like microbiome health, stealth pathogens and parasites etc. I booked in with a Functional Medicine Doctor and prayed it would be worth the money this time. After a decade of escalating symptoms, traditional GPs were still reassuring me that my bloodwork and scans were normal. And outwardly, I looked fine. In fact, better than fine! I was getting regular compliments on my appearance and rapid postpartum weight loss (hot tip: severe dietary restriction will lead to rapid weight loss).

I walked into the Dr's office and she took my history. This is something Functional Medicine Doctors will do that GP’s do not – have you fill out a 20+ page long form before the consult and then continue to ask questions about your health history based on your responses to the form. She posed a question, 

"Have you ever lived in a water-damaged or mouldy building?".

Me: "No?" 

"Has there ever been any leaks in any of the houses you've lived?"

Me: "Oh, well hang on... yeah". 

The doctor explained that I was a textbook case of Toxic Mould Illness, known medically as Chronic Inflammatory Response Syndrome acquired following exposure to the interior environment of Water-Damaged Buildings (CIRS-WDB, or just CIRS). Though not well known to the public, there are over 1700+ scientific articles on the condition, originally named “Sick Building Syndrome” in the 1970s. I would need diagnostic testing to confirm and in the interim was advised to schedule a mould inspection of my home - and to avoid anywhere there could be mould (forever). 

I asked, "Do we really need an inspection, I’ve never seen any mould at our place?"

She replied, "It's hidden".

In the meantime, and prior to the inspection, my husband, son and I visited family for 5 days. I was still trying to wrap my head around the diagnosis, the fact that many of my belongings were contaminated from previous residences and would need to be thrown out as well as all of the information about ‘mould avoidance’ and the drastic lifestyle changes that would be required to get well. Oh, and the fact it would take 18 months of treatment. But in that 5 days, I had so much less brain fog, I felt more energised and was eating a variety of foods without repercussion. I hadn’t been able to drink wine in well over a year without my brain switching off and here I was, life of the party again. My son’s face rashes disappeared completely and he was sleeping like a log. As we were arriving back home I turned the key of our front door and something finally clicked. 

 "There's mould in here", I said to my husband. In fact, I had him take a photo of our son's face so that we could compare how it looked in a few days' time. 

Sure enough, with no other changes, the rashes were back within 24 hours. It was all slowly starting to make sense. I did an ERMI test on the home, which is a sample of the dust in the environment that is DNA analysed to identify the level and types of mould present. The score was more than double what it should be, and the moulds present were not of the friendly variety. How could that be right, I thought. We can’t even see any mould!? Everything smells clean!?

Two months after the initial doctor's appointment, the mould inspector attended. We braced ourselves for what would be uncovered and the potential cost of mould remediation. Upon examining our ceiling cavity, he made a disturbing discovery: our second-story bathroom, installed just before we bought the home, had been improperly constructed. It was also installed straight over the top of another previously water-damaged bathroom. The new one was leaking into the wall and ceiling cavities below. Completely hidden from view, it had also saturated the wall of the built-in linen cupboard where we stored all of our bedding and towels. The mould colony had spread extensively, and was identified as Stachybotrys, commonly known as "Black Mould." The extent of the mould growth was shocking. It was so extensive that air samples revealed that the entire home had been contaminated by settled mould spores spreading out from the source. Basically, the situation was dire. All our non-washable belongings—fabric bedheads, mattresses, couches, cushions, books, anything porous or semi-porous—would need to be discarded due to contamination. Mould was even growing on the underside of our bed, and the bedding we had been using from the linen cupboard (as much as it smelled like laundry liquid) was heavily cross-contaminated by Stachybotrys. 

 Discovering that your own home is the source of you and your family’s illness is devastating beyond words. That the place you've invested so much in, and where you should feel safest, is hazardous - and anything you touch there can make you sick. Having to put your child to bed in a contaminated room, reading bedtime stories in a contaminated chair, and knowing that the air they are breathing is toxic—it's a heart-wrenching experience, and I’ve never experienced stress anywhere in the realm of it. The severity of the contamination meant that remediation would be extraordinarily costly, over $100,000, and we faced the grim reality of losing 80% of our belongings. It was enough to scare me from ever rebuying anything porous. It felt like we had endured a house fire - we couldn't live in the home and were losing everything we had - all while trying to navigate a new, lifelong illness and the significant life changes that would be required in order for my son and I to get well and stay well.

Understanding the concept of cross-contamination and settled spores was both depressing and terrifying. Initially, I thought avoiding mould simply meant staying away from visible patches, like big black walls of it. However, I soon learned that an object can appear perfectly clean (like everything in our home) but still be completely covered in settled mould spores if the air in the building it came from was affected, which will trigger an immune response in those sensitive mould. On top of all the fears that come with being a new mum, I found myself thinking, "So you're telling me that my son can pick up a toy that looks completely clean and get sick from it?" Overnight, my inherent sense of the world's safety was shattered. Eventually, we both detox, and I'll learn that we can handle small amounts of mould, or that I can easily dispose of invisibly mouldy objects before we get sick because my body will signal if they’re mouldy. But for at least a year, it feels like danger lurks in every single object around us, and I’m supposed to just live with it and not worry. In fact, it feels very much like it’s Covid February 2020 again and we’re told that just touching someone else’s used pen or having a single viral particle land on you will make you sick.

Thankfully, my husband is not genetically susceptible to mould toxicity. And loves us both enough to stick around through all this crazy. So, although he had less energy and felt a bit less mental clarity than usual in the mouldy home, he was, for the most part, well. That was a blessing. We needed at least one of us to stay healthy enough to keep working.

That point of the journey was really tough. A series of medications I was (wrongly) prescribed at the time made many of my symptoms significantly worse, and I genuinely felt like I might have a mental breakdown. One of the difficult aspects of toxic mould contamination and illness is the general lack of understanding and support. It's something that many individuals with CIRS will experience. Most people are entirely unaware of the severity of mould exposure beyond allergic reactions, with many believing that mould remediation simply involves painting over the affected area and getting on it. While people can easily comprehend the devastation of losing everything in a fire, they often can’t grasp the impact of toxic mould and how profoundly it can impact someone’s life. “Hey, how are you going with the mould?” isn’t a common question, which truthfully, really compounds the isolation and distress of the situation. In fact, you’d be more likely to hear “Is that a real illness?” than “Are you doing okay?”. I remember thinking, "How is it possible for an illness to make your home unliveable overnight, cause you to lose all your belongings, require thousands of dollars for recovery, and force you to avoid most buildings for life—and no one ever warned me it could happen?" But it does happen. And if you're a member of any "Toxic Mould Support" groups, you’ll know it happens daily.

We stayed in the house for two more weeks trying to make a plan. I cried every day. I counted the minutes until my husband got home so I could unleash a torrent of information I'd found that day on him and get his support to make sense of it. My brain was so inflamed that I couldn’t think straight or even begin to make sense of how to solve this problem for us. I tried to keep going to work one day a week and one night shift, but I was struggling more and more to be in the work office. My doctor explained that it was due to the mould exposure in the office and that my body had reached its tolerance threshold. I’d gotten an Animal Biosciences degree, and now I was sceptical of my ability to write even an email. On my last day, I was in the office for a total of 45 minutes before leaving and letting them know I’d be on leave for a while. I've read that email since, and despite rereading it 5 times before I hit send - it's full of spelling mistakes. I still looked normal.

I told Conor that I was going to go and stay with my parents at their place (1 ½ hours away) to try to research in a healthier environment, make a plan for remediation, then come back. I stayed away for two weeks and then returned home with our son. It’s far more difficult to arrange a legitimate mould remediation project than you might think, so I’d basically made no progress by the time of my return but wanted to be near my husband.

Within 30 minutes of being back in the house, my brain had stopped working. I couldn’t think and I was badly stumbling and stuttering to get my words out. “Hey, do you think we should um.. um.. just watch the um.. TV?”. I felt like I’d had two bottles of wine. But I couldn’t even watch TV, because I couldn’t pay attention. I felt so flat. We just went to bed. When I woke up, everything ached. The familiar haze of the bad brain fog was back. I went into my son’s room to wake him and found that his eye was completely swollen from sleeping on his mattress. With Toxic Mould Illness, there's a phenomenon where if you move away from the affected environment and start feeling better, returning to it and being heavily exposed again will trigger an even stronger inflammatory response by your immune system. It’s called “unmasking”. In fact, research has proven that even in a completely healed CIRS patient, 95% of symptoms will return if that person is exposed to a water-damaged building for 8 hours a day for 3 days. Essentially, any immune tolerance to consistent mould exposure is lost.

My son and I left that day and didn’t go back for six months. I took the same amount of time off work. We saw my husband only on the weekends.

The remediation process was extremely overwhelming. Beyond the financial strain, we were being given conflicting advice by different remediation companies about how to rectify the situation. There was a boatload of information online about how often remediations fail. I felt like I had to become an expert in a field that was completely foreign to me just months earlier in order to make sure it would be right. We’d already had to hire two different inspectors once I realised the first inspection hadn’t been done properly, so I was becoming aware that there was a lack of standards in the industry and that we could very potentially spend a lot of money without any actual results. We thought about selling, but for us, it felt even harder. And we would still need to fix the problem for the next person. 

There were a lot of moving parts to coordinate – the remediation itself, how to clear out the entire contents of the home (literally down to the last knife and fork) so that it could be decontaminated, how I was going to be involved in it when it made me sick to be around any of the stuff, arranging new flooring to replace all of the carpet, finding a mould-aware AC technician to clean our system and replace all of the ducting, meanwhile trying to understand complex techniques like "small particle cleaning" and how best to decontaminate a home to the level that is required for CIRS. I spent hours each day when my son went to sleep sifting through all of the conflicting information – as half the internet warned us that remediation would definitely be a waste of money and we should move (TO THE DESERT)(IN A TENT). 

I'm not one to throw around the word "trauma" lightly, but this experience fits the bill. Doctors help with the medical side, but they don’t help with the practical side. Finding practical information means sifting through the deepest depths of the internet and making your way through all of the horror stories first. It’s a lot on a relationship. My husband and I barely talked about anything unrelated to mould for six months. He lost most of his possessions as well as our savings, despite not having any outward effects from the mould himself. He had to undergo a lot of lifestyle changes in order to accommodate me and understand that any funds we had left over would go towards medical bills. To describe the level of support he’s given me during this time would be impossible; I am one of the lucky ones to have a husband like him, and I cannot imagine the level of despair that so many face when their partner doesn’t believe they are being affected by their home. My son, Ted, as much as I have worried for him, has also been a source of endless joy through the darker days.  

I’m well now, and very happy, and my beautiful son is free of all of the symptoms I described. Our home was remediated successfully by a good team. At the time of my diagnosis, I went in seeking help to resolve my brain fog and gut issues. I tested positive in a mycotoxin urine exposure test for all 5 out of 5 mycotoxins tested. The highest two were exposure to Trichothecene (produced by Stachybotrys) and Gliotoxin (produced by Aspergillus), which causes neuroinflammation and brain fog. Several studies have concluded that neurologists could not differentiate between people with repeated exposure to moldy buildings and people with mild to moderate traumatic brain injury. My doctor said it was the worst test result she had ever seen. Blood tests determined I was a carrier of the 17-2-52A/B/C - Mould Susceptible gene as well as the 1-5 Low MSH gene. And I had all of the blood marker diagnostic indicators of CIRS. All of the baseline blood tests conducted by a GP were still normal. It turns out I had 32 separate symptoms of mould toxicity. 

All of them have been resolved with treatment of CIRS alone.

Regular sore throat

Burning nerve pain in both arms and hands for 2.5 years (peripheral neuropathy)

Poor coordination

Eye floaters

Mild skin rashes

Hip pain

Poor concentration/unable to focus

Occasional headaches

GI Issues

Chest bone pain

Short term memory issues

Startled easily/nervous feeling

Multiple food intolerances

General aching and soreness (particularly aching shins, jaw and knees)

Shortness of breath/feeling like I couldn’t take a full breath

Occasional nausea

Candida

Sleep issues/insomnia

Fatigue

Heart palpitations and increased heart rate, occasional heart pain

Tinnitus (ringing in ears)

Frequent urination

Puffiness in my eyelids

Never got sick (immune suppression)

Muscle twitching and tremors

Sinus congestion daily, especially upon waking

Swollen lymphnodes

Hearing flutter

Right shoulder pain (couldn’t sleep on that side for 5 months)

Severe brain fog

Chronic clogged milk ducts with breastfeeding (over 100)

Low blood pressure

CIRS, unfortunately, fuels a hypersensitivity to mould once you become sick. So now, if I come into contact with mould, the brain fog, tiredness and muscle twitching will start immediately. I am sensitised to the point that I could sniff a shirt and tell you if it’s from a mouldy home. My immune system will mount a response every time it detects it – like a human mould-sniffing dog. That’s taken a lot to adjust to, but I'm learning to see it as a gift now rather than a curse - or a cool party trick at least. The fact that my body alerts me to unhealthy buildings very quickly now means I won’t end up living in another one – because I seem to be a bit of a magnet for water-damaged homes - and since treatment, I feel better very quickly after leaving a dodgy building instead of feeling terrible for an entire day.

CIRS will look different in everyone. This is because symptoms will depend on the level of exposure, which species the person was exposed to, for how long, their general health status and primarily, the fact everyone’s immune system behaves differently (Covid gave us a prime example of this). But most of us will end up with a degree of mould hypersensitivity afterwards.

Although I've shared some details of my story (believe it or not, this is the short version) and highlighted many of the negative aspects, I want to use this experience to help others facing the same challenges. It has given me a passion and a purpose and I am grateful for that. The research has shown that an alarming 24% of people possess a mould susceptibility gene. This susceptibility means that, with enough exposure to mould and water damaged environments, the likelihood of CIRS is extremely high for those people. Dr Sandeep Gupta, who is one of the primary doctors in Australia treating this illness, estimates that 11-13% of Australians are suffering from mould toxicity. That’s a lot of people, with not a lot of help available.

I want to be part of a movement that makes it easier for people to find a diagnosis and treatment for mould toxicity. I want regular GPs to know how to screen for this condition. I want proper standards established for inspectors and remediators. And I want patients to have significantly more support as they navigate this illness. Tragically, the leading cause of death for people with CIRS is suicide. I want to have a part in making sure that changes, to show those affected that although it will initially feel like your life is lost, diagnosis and treatment will actually give you your life back. To be diagnosed with a curable disease will always be a blessing, not a curse, and there is a good life to be lived beyond this diagnosis.