Aspergillosis Trust (AT) Key Messages for Media Enquiries

We keep hearing similar stories. So AT feel it is important to get these key messages across to prescribers, mainly GPs and asthma nurses in the frontline, who see patients first.

Earlier diagnosis and correct treatment helps outcomes.

  • Patients find it can take years to get a diagnosis of aspergillosis
  • All of us potentially at risk until we know enough about the process of infection to say differently
  • Aspergillosis is incurable and affects about 400,000 patients in the UK alone (1 in 160).

If patients are having asthma flare-ups despite using inhalers correctly, think of fungal lung infections. Aspergillosis can present as uncontrolled asthma.

If repeated attempts at treating lung infections with antibiotics fail, then think of fungal lung infections sooner. This will help to reduce unnecessary exposure to antibiotics. Therefore helping to limit antimicrobial resistance by implementing antimicrobial stewardship programmes (appropriate use of antibiotics, antifungals etc).

Aspergillosis is a ‘hidden’ lung condition, so it often gets missed. Patients appear ‘healthy’ even when really ill. Aspergillosis in all its forms is seriously disabling and life-changing. So refer to a specialist centre for expert guidance in managing aspergillosis.

AT would also like to convey these points too if possible:

  1. Using diagnostics i.e. point of care tests (POCT) will help to detect fungal infections earlier and initiate correct treatment, also avoiding unnecessary exposure to antibiotics.
  2. Monitoring antifungal levels helps prevent resistance developing. Avoiding and managing any interactions with patients other medications will also help maintain therapeutic levels of antifungals. See for patient version and healthcare professional version.

Specialist Centres in the UK

  1. National Aspergillosis Centre, Wythenshawe Hospital, MFT, Manchester. Director, Dr David Denning, Professor of Infectious Diseases in Global Health at University of Manchester.
  2. Royal Brompton and Harefield NHS Trust. Aspergillosis clinic being set up at Brompton. It is run by Dr Darius Armstrong-James, honorary consultant physician in Infectious Diseases and Medical Mycology. He is also a Clinical Senior Lecturer at the National Heart and Lund Institute, Imperial College, London.

For more details contact our press officer on

Article in Breathe – ERS Journal

Article in Bishop’s Stortford Independent 20th April 2019

Article in The Sunday Times 7th April 2019

Article in The Daily Mail 2nd April 2019

European Lung Foundation

Aspergillosis Trust are included monthly in their newsletter

The Road To The Correct Diagnosis

Leslee’s Story

It took almost five years for me to get the correct diagnosis.
Previously to that, I had been given medication for adult asthma, angina, chest infections, bronchitis, rheumatism and many more ‘theories.’
I had a Pulmonary Embolism approximately five years ago. It was quite a large one and I had blood clots on both lungs and down the side of the ribs. I was put on warfarin for six months. It took me about four months to recover but then I carried on life as before. Flying long haul too far away places for holidays with no ill effects. 
Four years ago we had decided to sell our family home and downsize to a bungalow with a very small garden. We found our ideal home and moved in.  It was a rented property as we wanted to be sure it was for us before we committed to buy.  Not long after we moved I started to become very breathless on exertion, multiple chest infections and generally felt unwell. I was very tired after doing the smallest of tasks. I was told I had adult asthma and given a couple of different inhalers. We had been there for about eighteen months when we were given notice to quit. The owners had decided to sell the property. It was January and we had booked to go to Portugal for two months to see if the milder climate would help me. My daughter told us to go and she would arrange for our furniture to be put in storage and we would move in with her on our return. I remember boarding the Ryanair flight at 7.30am on a freezing wet January morning. You had to walk out on the runway to board and my lungs felt like they were going to explode. 

After twenty four hours in Portugal, I could not believe the difference. I could walk for at least two miles or more without being breathless. I didn’t need or use my inhaler throughout the time I was there.

On return, we stayed at my daughter’s and almost immediately all the old symptoms came back. Chest pain, breathlessness, constant unproductive coughing, night sweats.
One night after climbing the stairs I started my usual coughing fit and then I felt a gurgling and an uncontrollable huge amount of blood came up. My husband phoned for an ambulance.  This was to be the start of many more of these bleeds and nobody could explain or knew what was happening. The bleeding always started at night after I had climbed the stairs and was breathless and coughing. Some were worse than others but I did have two major life threatening hemoptysis. During the first one, I was rushed into theatre and a Vena cava filter was fitted into the main aorta near to the heart.
It is like a tiny umbrella without the cloth and it is meant to trap blood clots and prevent them from reaching the lungs. I was also put on apixaban an anticoagulant, only this time it wouldn’t be for six months it would be for life. 

It was at this time that a ‘mass’ on the inside of the main pulmonary artery at the entrance to the lung was found. It was about the size of a walnut and was suppressing the flow of blood getting into my right lung.  This started a flurry of investigations, ct scans, pet scan, discussions with several respiratory consultants and one from Papworth hospital. It was concluded that the mass was an old blood clot from my very first pulmonary embolism, they could match it by looking at the ct scans I had taken twelve months previous that the Warfarin had not dissolved. It had solidified and now resembled a puma stone. Blood was seeping through it slowly and also getting passed the very narrow gap in my artery. I was told it would be far too dangerous to remove.
I now believe that this ‘mass’ was the main reason my aspergillosis went undetected for a further two years.  My future breathlessness, regular bleeds, chest pain were all attributed to this rare discovery. 

It was by chance that on one of my many admittances to a hospital, that I was treated by a consultant whom I had not seen before. He was Maltese and he said he was going to look at me with ‘fresh eyes.’  He believed that everyone was concentrating on my mass but that he was going to ignore that and delve deeper into my lungs.  Lots of blood tests, CT scan with contrast, sputum tests and eventually I was told I had ABPA and possible CPA.
I was started on voriconazole and although I was still getting bleeds I was feeling much better but I started to get side effects which included blurry vision, photosensitivity, headaches and so it was stopped. It was at this point i went to see Professor Denning.  30th December 2016. It was a 600+ mile round trip in not the best of weather conditions. I remember thinking do they not celebrate Hogmanay in Manchester.
I was started on posaconazole, prednisone reduced slowly from 30mg daily to 2mg daily.  
I am glad to say that i have not had a bleed from my lungs since i started on posaconazole, l managed to lose the four stone i had put on due to the steroids with exercise and diet.
I had four visits to Manchester in 2017 and i had a stable symptom free year. 
This year has been pretty bad with chest infections and three collapsed lung but i am turning a corner again and ready for the summer.  
I know we can never be sure of the exact source of me contracting aspergillosis.  I was 63 when i started getting the symptoms and 68 when i got a proper diagnosis. 
I used to spend a lot of time over the years gardening, in the greenhouse, looking after chickens, mixing the compost heap.  Was it any one of these that had caused it?

I came to the conclusion that it wasn’t. I am almost certain that mine started when we moved into the bungalow. Knowing what I know now I would never have dreamt of moving into it. We were surrounded by working fields.  At the back of us were huge grain silos.  When these were in use the dust and tiny corn ears in the air that would land on our car, patio set and window ledges was unbelievable. So much so that Brian phoned the environmental health on two occasions. They investigated and told us that the company would change the filters in the silos too much smaller ones. 

Because of the pulmonary embolism i had suffered, it had left scarring on my lungs and i believe all the dust coming from the silos and off the fields were sticking to the scarring. Brian had healthy lungs so it did not affect him in the slightest. 

We are also surrounded by berry fields. Blairgowrie is called the Berry Toon.

These are also a danger to people because of the pesticide they are sprayed with. 

I often walked through the strawberry fields picking strawberries so did this contribute?

We will never know for certain which one or maybe all left me with damaged lungs. 
What I do know is awareness and diagnosis of aspergillosis is now much quicker in my hospital. My respiratory consultant Mr Tom Fardon, who works with an excellent team of consultants have come on in leaps and bounds over the last five years with their knowledge of aspergillosis. Indeed some if not all are members of the Aspergillosis Trust.  I know this because two of them told me when I was last in hospital that they had read My Story on Aspergillosis awareness day this year.  
It will be a long way off until we have units like there is at NAC spread around the UK but I would hope that as awareness and knowledge is absorbed by more respiratory consultants, the need to be sent to Manchester may lessen.
I am fully confident with the treatment i am getting at my hospital now and i have seen a difference with the amount of knowledge the respiratory team have acquired. 
Hopefully the GP’s will start getting onboard with this disease and begin to diagnose it sooner.

Leslee Alexander

Sandra’s Story

It took about two years to finally be diagnosed with allergic bronchopulmonary aspergillosis (ABPA) in October 2008. In that time initially in the Autumn of 2006, I had a chest/lung infection about once a month, every month. These would take several weeks to recover from. Each time I went to the GP, I was given amoxicillin, a broad spectrum antibiotic, with no sputum tests taken and cultured. So treatment was empirical (or blind) as the infecting microbe was unknown. That went on for about 6 months and I was told by the GP, ‘some patients with asthma just do get lots of infections’. It’s important to raise awareness so that frontline staff such as GPs and asthma nurses think of fungal infections sooner, if repeated courses of antibiotics aren’t helping. This will also help to limit unnecessary exposure to antibiotics and help to reduce Antimicrobial Resistance (AMR).

Also in early Summer 2008, I contacted the GP whilst having a severe asthma attack and needed to be given nebulised salbutamol. I didn’t have a nebuliser at home at that stage. ABPA often presents as uncontrolled asthma, so it is ‘hidden’ or ‘masked’ which is why it isn’t picked up. GPs and asthma nurses can assume that patients aren’t using their inhalers regularly or correctly, when this isn’t the case.

It isn’t just people with asthma that can be affected by aspergillosis, but those with cystic fibrosis, bronchiectasis, COPD, or TB. Also people with Primary Immunodeficiency Syndromes (as in my case), or those on immunosuppressive therapy for organ transplants, or those on cancer chemotherapy or people with HIV/AIDS.

I had a quiet spell with the good weather, as ABPA can calm down when it’s warm and dry. No further investigations were made, until I needed an x-ray for what seemed like another bad chest infection in October 2008. I had sharp pains when breathing in, which were in the middle of my chest. Instead of another infection, my lung had collapsed! It was the left upper lobe that had collapsed, due to a mucous plug.

That was how the diagnosis of ABPA was eventually made, as aspergillosis causes hard, mucous plugs to form, which obstruct the airways. Choking-coughing fits, from trying to remove these plugs are a feature of ABPA and are exhausting. The treatment for the collapsed lung was prednisolone (steroid tablets) for two weeks, which allowed the airway to widen and for the plug to be coughed-up. The ABPA did cause permanent damage in the form of bronchiectasis (widening of the airway from mucous plugs and scarring). That meant damage to the cilia (tiny hairs) that line the airway and help to remove mucous. So it is harder to clear mucous in bronchiectasis and that creates a breeding ground for further microbes, causing infections and a vicious circle.

Things have progressed from ABPA unfortunately, as I now have lung cavities infected with azole-resistant Aspergillus. You can read more of my patient story, along with others on The World Aspergillois Day section of the website.

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