My partner’s son has just been diagnosed with one of the same diseases she has. It’s come directly from our social housing, through no fault of our own.
So, we’re having to pay for his treatment. And sadly we need your help to try and get him well, as the NHS don’t deal with it. While this illness is not even recognised in the UK, it could potentially affect millions of people.
Rampant chronic illness
My partner Nicola Jeffery is chronically ill and disabled. In short, she lives with:
- Hypermobile Ehlers-Danlos Syndrome (hEDS).
- Myalgic Encephalomyelitis (ME).
- Postural Orthostatic Tachycardia Syndrome (POTS).
- Deformations in left foot, left leg shortness.
- Temporomandibular Joint Dysfunction.
- Craniocervical Instability (CCI).
- Atlantoaxial Instability (AAI).
- Megaloblastic Anaemia.
- Peripheral Neuropathy.
- Gastroparesis and Dumping Syndrome.
- Non-epileptic tonic clonic and focal autonomic impaired awareness seizures.
Many of these are not recognised on the NHS. So, we’ve had to see private medical professionals to get her treated. Some of this was funded by my mother. Other aspects, like the ME, have been paid for by crowdfunding and donations from friends and the public. We are very grateful for this. You can read more about that, here.
But we now have confirmation that Nic’s son (called Lil Man in this article) lives with one of the diseases she does. The problem is, again, the only treatment available for it is via the private sector.
Please continue reading below to find out more about this. But if you can help with the £1,500 cost of Lil Man’s treatment you can donate via:
Mycotoxins are secondary metabolites given off by mould and fungi. They cause disease. As the World Health Organisation (WHO) wrote [pdf]:
Mycotoxicoses are diseases caused by mycotoxins, i.e. secondary metabolites of moulds. Although they occur more frequently in areas with a hot and humid climate, favourable for the growth of moulds, they can also be found in temperate zones.
Exposure to mycotoxins is mostly by ingestion, but also occurs by the dermal and inhalation routes. Mycotoxicoses often remain unrecognised by medical professionals, except when large numbers of people are involved.
There’s a lot of literature on illness caused by eating mycotoxins. 25% of our agricultural products are infected with them. Interestingly the UK government recognises this. There are laws in place surrounding the levels that the Food Standards Agency (FSA) permits in products. It’s website notes that:
Mycotoxins can cause a variety of adverse health effects in humans including cancer (some are genotoxic), kidney and liver damage, gastrointestinal disturbances, reproductive disorders or suppression of the immune system. Antitoxins are the most harmful type of mycotoxin, they can potentially cause cancer or problems with digestion, reproduction or the immune system.
But what’s not even recognised in the UK is the impact of mycotoxins from damp and mould in buildings. And potentially, this could be making millions of people ill. Yet no one wants to talk about it.
The health risks
fatigue, neurocognitive symptoms, myalgia, arthralgia, headache, insomnia, dizziness, anxiety, depression, irritability, gastrointestinal problems, tremors, balance disturbance, palpitations, vasculitis, angioedema, and autonomic nervous system dysfunction.
Specific conditions include:
infections and mycoses, chronic and fungal rhinosinusitis, IgE-mediated sensitivity and asthma, other hypersensitivity reactions, pulmonary inflammatory disease, immune suppression and modulation, autoimmune disorders, mitochondrial toxicity, carcinogenicity, renal toxicity, neurotoxicity, and DNA adducts to nuclear and mitochondrial DNA causing mutations. A significant mechanism of injury includes oxidative stress…
A health dead end
Yet when you look for Mycotoxicosis on the NHS website, it doesn’t exist. The nearest thing is Aspergillosis, which is a condition caused by mould but only related to the pulmonary system.
Nic was already under the care of Dr Sarah Myhill. As part of her investigations into Nic’s health she wanted her to have mycotoxins testing.
But, this wasn’t straightforward. Testing for mycotoxins has to be done in the US, with a private UK laboratory acting as a middle man. So, we got the testing done, her results were positive, and she had a six month course of treatment.
We always wanted Lil Man testing as well. So, last month he did the same thing.
US testing results
These were Nic’s results:
To break them down:
- Aflatoxins are from the mould fungi family Aspergillus. Among other things like immunosuppression, they have been linked to an increased risk of liver cancer. Dr Myhill told us it was very unusual to see Aflatoxins present, as they generally are only present in contaminated food in developing and Asian countries.
- Ochratoxin A is from the fungal species Aspergillus or Penicillium. It has been linked to cognitive dysfunction and depression, kidney problems and immunotoxicity, among other things.
- Mycophenolic Acid [pdf, p3] is from the fungal species Penicillium. It is usually found in conjunction with Ochratoxin A. It can cause immunosuppression.
- Citrinin is also from the Penicillium fungi family. It’s effects are similar to Ochratoxin A.
So, these were Lil Man’s results:
As a reference point, a Turkish study found the mean level of Ochratoxin A in the sample population to be just over nine ng/g creatinine. At this level, the study pointed to potential health risks, including oxidative stress. So, both Nic’s and Lil Man’s were significantly higher.
In some respects, Nic’s was more concerning. This is because she already lives with so many underlying illnesses and conditions, that the mycotoxins were just making her so-called ‘viral load’ even heavier. The Ochratoxin A was the most problematic.
Her son’s result was expected. But we didn’t think it would be as high as it was (25.97 for Ochratoxin A versus Nic’s 13.44). Literally, at the top end of the lab’s testing scale. Why was it expected? Because we guessed his bedroom had effectively been poisoning both of them.
Around seven years ago there was a flood from the neighbouring property into Lil Man’s bedroom. Our housing association came and tidied up the plaster work, but did not dry the room out. A while later, Nicola noticed the floor boards sinking. So, she called the housing association again.
A contractor lifted up one area and all the floor joists were rotten. But they merely put MDF over one small area, and did nothing else. So, effectively the damp from the flood was left untreated.
Now, there is no visible damp in Lil Man’s room. Meanwhile, there is in our bathroom. So, you’d be forgiven for thinking all was well.
But as part of our investigations into Nic’s health, we went to University College London asking if their civil engineering department could do some tests. At this point we knew her mycotoxins results and wanted to know why the Ochratoxin A was so high; we suspected Lil Man’s bedroom. Because Ochratoxin A specifically comes from water damaged buildings. Also, the Penicillium family of fungi is also commonly found in water damaged buildings. So, two of Nic’s other mycotoxins were explained by this.
The excellent Dr Yasemin Aktas happily obliged with our request. Her team came and did what’s called a Mycometer survey; something they pioneered. The testing has been approved and is used by the Danish government. Essentially, it measures the levels of mycotoxins in the air and on surfaces.
The team did the whole of our upstairs. And the results were as we suspected: Lil Man’s bedroom was the highest; the readings almost being in the red (toxic) zone. The level’s lowered the further you got away from the wall where the flood was; that is, his bedroom, then the toilet, then the bathroom, then the master bedroom:
So, thanks to both Dr Myhill’s testing and UCL’s survey, we can say very confidently that Lil Man’s bedroom has made both him and Nic ill.
A 13-year-old with chronic illness
His symptoms fit with this. He has:
- Repeated bouts of upset stomachs, juxtaposed with difficulty going to the toilet.
- Repeated chest infections after colds, with coughs sometimes lasting for months.
- Short term memory issues which are very marked; difficulty concentrating and some functional disruption.
- Far more fatigue than should be witnessed in someone his age.
- Skin issues with repeated inflammation, coupled with excessive discharge in his eyes.
We have to get this sorted for him. But because the NHS doesn’t recognise it, we’ll have to treat him privately.
We know straight off this is going to cost, in total, around £1,500. This includes medication and repeated testing at the end of the six month course of treatment.
We’re currently on Universal Credit, with me caring full time for Nic while doing as much work as I can to try and get us off benefits. So – we need people’s help to pay for Lil Man’s treatment.
If you can help towards the £1,500 to try and get him better, please donate via PayPal:
But it’s not just Nic and Lil Man who are affected.
Millions at risk
Estimates at the number of renters living in damp or mouldy homes vary. But a study by pest control company Rentokil estimated that 5.8 million people lived in rented (private or social) homes with “damp or condensation” problems. But other figures put it even higher.
On the lower side of estimates, and property investigations service CIT said that 12% of social housing had been subject to a complaint about damp or mould. That around 600,000 homes in the UK. Or, to put it another way, at least one in 10 UK residents (just over one million) who live in social housing have problems with damp, mould and/or condensation. Speaking from personal experience, this is probably a vast underestimate.
In private renting, Shelter estimated [pdf, p20] that 38%, or around 3.42 million, private renters had problems with damp.
So, either way, over 4.4 million renters live in damp or mouldy homes. But, this may be the tip of the iceberg. Because testing for damp and mould in the UK does not factor in mycotoxins; hence UCL’s research is so groundbreaking.
Housing associations: washing their hands?
Mould and fungi give off what’s known as hyphal fragments. These fine bits of the organism travel around the environment, and are one of the sources of mycotoxicosis via inhalation and dermal routes. But even when these hyphal fragments die, they and the mycotoxins in them still remain dangerous.
The point being – Lil Man’s water damaged bedroom came back as ‘dry’, therefore safe and not a problem. This was when our housing association’s surveyor came round and tested it. But UCL’s testing told a different story. Because in layman’s terms the ghosts of the mould and fungi are still there; constantly being moved around from the walls and floor cavities they inhabit.
All this means our housing association will not deal with the issue. We’ve been through all its processes and have reached a dead end. So, we’re still living in a property that is effectively toxic. Our next course of action is to take this to the Housing Ombudsman and politicians to try and get help for us. But we also intend to affect change up and down the country.
A public health crisis
Mycotoxicosis is probably rampant across the UK. But because the NHS, housing associations and government don’t even recognise it, people’s symptoms are probably dismissed as mental health, diet-related or due to their lifestyles. We don’t have enough fingers to count the number of people on our estate alone who have far worse damp and mould than us; have chronic illness but yet are not getting any medical or social support.
There is a public health crisis across the country. Yet no one will admit that it exists.