The Hidden Job Nobody Talks About: Living with Chronic Illness
For many people, the hardest part of chronic illness is not always the symptoms. It is the constant work of managing them.
Key Points
- Chronic illness often creates a significant hidden workload.
- Patients manage medications, appointments, prescriptions, side effects, monitoring and healthcare administration.
- Fatigue and brain fog can make this workload even harder.
- Organisation helps, but organisation itself requires effort.
- Technology, pharmacists, medication reviews, family support and patient communities can help reduce the burden.
- Nobody should feel they have failed because they occasionally forget something.
Contents
- The Work Nobody Sees
- The Constant Background Process
- The Hidden Impact of Fatigue
- Grieving the Loss of Simplicity
- The Expert Nobody Wanted to Become
- Building an External Brain
- When Organisation Itself Needs Help
- Practical Ways to Reduce the Mental Load
- The Annual Medication MOT
- You Do Not Have to Carry It All Alone
- Final Thoughts
The Work Nobody Sees
When people think about chronic illness, they usually think about symptoms.
Breathlessness.
Pain.
Fatigue.
Cough.
Hospital appointments.
Medication.
These are certainly part of the picture.
But many patients would argue that another challenge receives far less attention.
The work.
Not paid work.
The hidden work of being a patient.
For many people, living with a chronic illness means becoming the organiser, administrator, coordinator and decision-maker for an ongoing healthcare programme.
There are prescriptions to order.
Appointments to attend.
Letters to understand.
Blood tests to arrange.
Side effects to monitor.
Questions to remember.
Symptoms to interpret.
Forms to complete.
Information to absorb.
And unlike most jobs, there are no weekends off.
Many patients are not only managing an illness. They are managing an entire healthcare programme.
The Constant Background Process
One patient recently described chronic illness as being like a computer running a programme permanently in the background.
Even on good days, the process never completely switches off.
Questions quietly run through the mind:
- Do I have enough medication?
- When is my next appointment?
- Should I order my prescription?
- Is this symptom normal?
- Is this a side effect?
- Have I forgotten something important?
Most healthy people can devote their attention entirely to daily life.
Many patients are simultaneously running this constant background process.
That process consumes energy.
It consumes concentration.
And over time it can become exhausting.
The work of being ill can sometimes feel almost as exhausting as the illness itself.
The Hidden Impact of Fatigue
Fatigue affects much more than physical energy.
It can affect:
- Memory.
- Concentration.
- Planning.
- Organisation.
- Decision-making.
This creates a difficult cycle.
The more tired someone becomes, the harder it is to stay organised.
The harder it is to stay organised, the easier it becomes to miss a prescription, forget an appointment or overlook an important detail.
That can create stress.
Stress itself is tiring.
Many patients eventually discover that they are not simply carrying the burden of their illness.
They are carrying the burden of managing the illness.
This is not weakness.
It is a normal human response to a sustained workload.
Grieving the Loss of Simplicity
Many people are not only grieving the loss of health.
They are grieving the loss of simplicity.
Remember when you could:
- Go away for the weekend without checking medication supplies?
- Accept invitations without calculating energy levels?
- Spend a day outdoors without thinking about medication side effects?
- Plan months ahead without wondering how you might feel?
Spontaneity often gives way to planning.
Simple decisions become calculations.
Many people find themselves missing the ease and simplicity they once took for granted.
That feeling is entirely understandable.
The Expert Nobody Wanted to Become
One of the remarkable things about people living with chronic illness is how much they learn.
Over time, patients often become experts in:
- Medications.
- Blood tests.
- Side effects.
- Hospital systems.
- Insurance.
- Benefits.
- Referral pathways.
Most never intended to acquire this knowledge.
They learned because circumstances required it.
As one patient put it:
"I never applied for the job, but somehow I became the project manager for my illness."
Many readers will recognise that immediately.
A person with aspergillosis may spend five minutes taking medication.
They may spend an hour thinking about medication.
The burden is often not the tablet itself.
The burden is remembering the tablet, remembering to reorder the tablet, remembering what it interacts with, remembering the blood test, remembering the side effects and remembering what to do if something changes.
Building an External Brain
One lesson many patients learn is that memory alone is not enough.
This is especially true when fatigue, pain, poor sleep or brain fog are present.
Successful long-term management often depends on creating systems that do some of the remembering for us.
Examples include:
- Paper diaries.
- Calendars.
- Whiteboards.
- Medication reminder apps.
- Smartphone reminders.
- Alexa or Siri reminders.
- Weekly pill organisers.
- Shared family calendars.
One patient described this as creating an "external brain".
The exact system matters less than the principle behind it.
The aim is not to remember everything. The aim is to build systems that do some of the remembering for you.
Technology Can Help
Smart speakers such as Amazon Alexa and voice assistants such as Apple Siri can act as simple reminder systems.
They can be used for:
- Medication reminders.
- Prescription reminders.
- Appointment reminders.
- Weekly health checks.
- Shopping lists.
- Clinic preparation.
For example:
"Alexa, remind me every Sunday evening to check my medication supplies."
Or:
"Hey Siri, remind me every first Monday of the month to order my repeat prescriptions."
For many patients these systems reduce stress and make it less likely that important tasks will be forgotten.
When Organisation Itself Needs Help
People are often told to "stay organised".
It is good advice.
But it overlooks something important.
Organisation itself requires effort.
Creating reminders.
Maintaining calendars.
Sorting medication.
Reading letters.
Booking appointments.
Ordering prescriptions.
All of these tasks require energy.
For someone already dealing with fatigue, breathlessness, pain or brain fog, even staying organised can sometimes feel overwhelming.
This is why support matters.
Support is not always about physical assistance.
Sometimes it is about sharing the responsibility of remembering.
A partner who reminds you about an appointment.
A family member who collects a prescription.
A friend who helps complete a form.
A pharmacist who helps simplify medication schedules.
These small acts can remove a surprising amount of pressure.
Organisation helps. But sometimes organisation needs help too.
Practical Ways to Reduce the Mental Load
Many patients find it helpful to:
- Schedule a weekly "health admin" session.
- Use a diary, whiteboard or calendar.
- Set medication reminders.
- Use a weekly pill organiser.
- Ask about pharmacy reminder services.
- Consider medication packaging systems.
- Share calendars with family members.
- Keep a running list of questions for clinic appointments.
The goal is not perfection.
The goal is to make life easier.
The Annual Medication MOT
Cars receive regular servicing.
Computers receive updates.
Financial plans are reviewed.
Yet many people take the same collection of medications for years without anyone stepping back and looking at the whole picture.
A structured medication review or polypharmacy review can help answer questions such as:
- Do I still need all these medicines?
- Could any side effects be contributing to symptoms?
- Are there interactions?
- Can the schedule be simplified?
- Is every medication still serving a clear purpose?
Sometimes the most useful prescription is not a new medication.
It is a review of the medications already being taken.
Sometimes the most useful prescription is not a new medication, but a review of the medications already being taken.
You Do Not Have to Carry It All Alone
Many of us value independence.
That is understandable.
However, there is a difference between independence and carrying every burden alone.
Help may come from:
- Pharmacists.
- Occupational therapists.
- Family.
- Friends.
- Carers.
- Charities such as Age UK.
- Patient support groups.
Often the most valuable support is not somebody doing something for us.
It is somebody helping us remember.
A second pair of eyes.
A second memory.
A second person asking:
"Have you got everything you need for next week?"
Final Thoughts
Living with a chronic illness is often described in terms of symptoms, test results and treatments.
But behind every clinic letter is a person carrying a mental checklist that never completely disappears.
The medications.
The appointments.
The prescriptions.
The side effects.
The blood tests.
The questions.
The worries.
The constant balancing act.
If you sometimes feel tired not only from your illness, but from the work of managing it, that feeling is understandable.
It may simply be a reflection of how much you are carrying.
No patient should feel they have failed because they forgot something, ran out of medication, missed a reminder or needed support.
Managing chronic illness is complex.
Nobody does it perfectly.
The aim is not perfection.
The aim is to build enough support, systems and kindness around ourselves that daily life becomes a little easier to manage.
The goal is not to prove that you can manage everything alone.
The goal is to build enough support around yourself that life becomes easier, safer and more enjoyable.
Author: National Aspergillosis Centre Patient Support Team
Last reviewed: June 2026
Medical disclaimer: This article provides general information and support. It should not replace advice from your own doctor, pharmacist, nurse or specialist team.
Useful sources and further reading
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Suggested Internal Links
National Aspergillosis Centre Patient Support
https://aspergillosis.org/patients/Living with Aspergillosis
https://aspergillosis.org/living-with-aspergillosis/Chronic Pulmonary Aspergillosis (CPA)
https://aspergillosis.org/chronic-pulmonary-aspergillosis/Allergic Bronchopulmonary Aspergillosis (ABPA)
https://aspergillosis.org/allergic-bronchopulmonary-aspergillosis-abpa/Aspergillus Bronchitis
https://aspergillosis.org/aspergillus-bronchitis/Understanding Fatigue in Chronic Illness
Medication Information Hub
https://aspergillosis.org/antifungal-drugs/Voriconazole Information
https://aspergillosis.org/voriconazole/Itraconazole Information
https://aspergillosis.org/itraconazole/Posaconazole Information
https://aspergillosis.org/posaconazole/Isavuconazole Information
https://aspergillosis.org/isavuconazole/Adrenal Insufficiency and Steroid Information
National Aspergillosis Centre Online Support Meetings
https://aspergillosis.org/patient-meetings/The Aspergillosis Trust
https://aspergillosistrust.org/
Suggested External Links
Age UK
https://www.ageuk.org.uk/Carers UK
https://www.carersuk.org/NHS Structured Medication Reviews
https://www.england.nhs.uk/primary-care/pharmacy/smr/NHS Repeat Prescriptions
https://www.nhs.uk/nhs-services/prescriptions/
More Than a Referral Centre: How the National Aspergillosis Centre Supports Patients and Healthcare Professionals Across the UK
Combining specialist clinical care, diagnostics, multidisciplinary expertise, patient support, education and research to improve outcomes for people living with Chronic Pulmonary Aspergillosis.
The National Aspergillosis Centre (NAC) was established by NHS England to provide highly specialised care for people living with Chronic Pulmonary Aspergillosis (CPA), a serious fungal lung disease that can develop in patients with pre-existing respiratory conditions.
Over the last sixteen years the service has evolved into much more than a referral clinic. Today, NAC combines specialist clinical care, advanced diagnostics, multidisciplinary expertise, patient support, education and research, working alongside local healthcare teams throughout the UK.
Many clinicians are familiar with NAC as a specialist referral service. However, fewer may be aware of the breadth of support available through the centre, including specialist multidisciplinary team discussions, diagnostic expertise, physiotherapy, nursing support, pharmacy services, patient education programmes and nationally recognised fungal diagnostics.
This article provides an overview of how NAC supports both patients and healthcare professionals in the diagnosis and management of Chronic Pulmonary Aspergillosis.
"The National Aspergillosis Centre exists not only to care for patients with Chronic Pulmonary Aspergillosis, but also to support healthcare professionals throughout the UK in diagnosing and managing this complex condition."
Contents
- Why specialist support matters
- What does NAC do?
- Working with local teams
- Benefits for patients
- Benefits for healthcare professionals
- Patient support and education
- Research, education and innovation
- Why awareness still matters
- Further resources
- Working together
Why specialist support matters
Chronic Pulmonary Aspergillosis (CPA) is a serious fungal lung disease that can develop in people with pre-existing respiratory conditions including bronchiectasis, Chronic Obstructive Pulmonary Disease (COPD), previous tuberculosis, sarcoidosis and other structural lung diseases.
Patients may present with chronic cough, breathlessness, fatigue, weight loss, recurrent chest infections or haemoptysis. These symptoms frequently overlap with more common respiratory conditions, making diagnosis challenging.
CPA remains a relatively uncommon disease and many clinicians may encounter only a small number of cases during their careers. As a result, specialist support can be valuable when diagnosis is uncertain, investigations are difficult to interpret or treatment becomes complex.
The National Aspergillosis Centre was established to provide that support.
What does the National Aspergillosis Centre do?
NAC is commissioned by NHS England to provide highly specialised care for patients with Chronic Pulmonary Aspergillosis.
The service supports patients through:
- Specialist assessment and diagnosis
- Multidisciplinary review of complex cases
- Long-term disease monitoring
- Antifungal treatment planning and optimisation
- Therapeutic drug monitoring
- Assessment and management of antifungal resistance
- Management of drug interactions and adverse effects
- Specialist physiotherapy support
- Specialist nursing support
- Access to clinical research and trials
Every new CPA diagnosis is reviewed within a specialist multidisciplinary team, helping to ensure a consistent and evidence-based approach to diagnosis and management.
NAC in 2023–24
- 209 referrals assessed for aspergillosis
- 101 new confirmed CPA diagnoses
- 311 patients under active specialist follow-up
- 71 external cases discussed through the National MDT
- 56 remote advice and guidance consultations
Working with local teams
One of the most common misconceptions about referral is that patients must transfer all of their care to Manchester.
In reality, NAC operates primarily through a shared-care model.
Wherever possible, investigations, imaging, monitoring and routine care are organised locally, with NAC providing specialist input and treatment recommendations. This approach allows patients to benefit from national expertise while remaining close to home.
The service also supports healthcare professionals through remote advice, specialist consultation and participation in the National Multidisciplinary Team (MDT) meeting.
For many clinicians, discussing a case through the MDT can help clarify diagnosis, identify additional investigations and support treatment decisions before or alongside formal referral.
Benefits for patients
Patients referred to NAC gain access to one of the world's largest specialist CPA services.
Benefits include:
- Specialist review by clinicians with extensive experience in fungal lung disease
- Diagnostic clarification and confirmation
- Optimisation of antifungal therapy
- Management of treatment-related complications
- Access to specialist physiotherapy and nursing support
- Educational resources and self-management support
- Opportunities to participate in research
For many patients, specialist review provides reassurance, a clearer understanding of their condition and confidence in their treatment plan.
Benefits for healthcare professionals
The National Aspergillosis Centre exists not only to support patients, but also to support healthcare professionals.
Referral or specialist discussion may be particularly useful when:
- The diagnosis remains uncertain
- Radiological findings are difficult to interpret
- Patients are not responding as expected
- Antifungal toxicity develops
- Resistance is suspected
- A specialist second opinion would be valuable
Clinicians also gain access to expertise in therapeutic drug monitoring, antifungal stewardship, complex fungal diagnostics and long-term disease management.
Each referral creates opportunities for shared learning, helping local teams build experience and confidence in recognising and managing aspergillosis.
Patient support and education
One of the most distinctive features of the National Aspergillosis Centre is the support available beyond routine clinical care.
Many patients referred to NAC have experienced a long and sometimes frustrating journey to diagnosis. Symptoms may have been present for months or years before Chronic Pulmonary Aspergillosis is recognised.
Following diagnosis, patients are often faced with an unfamiliar condition and may encounter alarming information online that relates to very different forms of aspergillosis. It is therefore common for patients and families to feel anxious, isolated and uncertain about what the future may hold.
For this reason, patient support forms an important part of the NAC service.
Through the Community, Awareness, Research, Education and Support (CARES) programme, patients have access to:
- Regular patient support meetings
- Educational webinars and presentations
- Health and wellbeing sessions
- Patient newsletters
- Online information resources
- The Aspergillosis Patients and Carers website
- Peer support opportunities
One of the most common comments from newly diagnosed patients is the relief of discovering that they are not facing the condition alone. Meeting others living with aspergillosis and having access to trusted information can make a significant difference to confidence, understanding and long-term self-management.
"For many patients, finding the CARES programme is the moment they realise they are no longer facing aspergillosis on their own."
By combining specialist clinical care with education, support and community, NAC aims to help patients and families feel informed, supported and empowered throughout their journey.
Research, education and innovation
The National Aspergillosis Centre works closely with the Mycology Reference Centre Manchester (MRCM), one of Europe's leading specialist fungal diagnostic laboratories.
Together, NAC and MRCM contribute to:
- Clinical trials of new antifungal therapies
- Development of new diagnostic techniques
- Antifungal resistance surveillance
- National and international clinical guidelines
- Professional education and training
- Patient-centred research
The partnership has been recognised internationally through European Confederation of Medical Mycology (ECMM) Diamond Centre of Excellence status.
This close integration of clinical care, diagnostics, education and research helps ensure that patients benefit from the latest developments in fungal disease management.
Why awareness still matters
Chronic Pulmonary Aspergillosis remains an under-recognised disease worldwide.
Many patients present with symptoms that overlap with more common respiratory conditions such as COPD, bronchiectasis or previous tuberculosis. As a result, diagnosis can sometimes be delayed or missed.
This is not because clinicians are failing. CPA is an uncommon disease that can closely resemble more familiar respiratory conditions.
The role of NAC is therefore not simply to provide specialist treatment, but also to support earlier recognition of CPA through education, diagnostic support and collaborative working with healthcare professionals throughout the UK.
By raising awareness and improving access to specialist expertise, we hope to help more patients receive timely diagnosis, appropriate treatment and long-term support.
Further resources
- Aspergillosis Patients & Carers Website
- Chronic Pulmonary Aspergillosis Information Hub
- Patient Support Resources
- World Aspergillosis Day Resources
- Mycology Reference Centre Manchester
Working together
The National Aspergillosis Centre was established to ensure that patients with Chronic Pulmonary Aspergillosis have access to specialist expertise wherever they live.
Through shared-care working, multidisciplinary collaboration, specialist diagnostics, patient support, education and research, NAC continues to work alongside healthcare professionals throughout the UK to improve outcomes for people living with fungal lung disease.
Whether through referral, multidisciplinary discussion, specialist advice or educational resources, our aim remains the same: helping clinicians diagnose and manage aspergillosis with confidence while ensuring patients receive the support they need.
NAC is more than a referral centre. It is a national resource for patients, clinicians and healthcare services working together to improve the diagnosis and management of Chronic Pulmonary Aspergillosis.
Living Safely with Pets When You Have Aspergillosis
Pets can be an important part of life for many people with aspergillosis. They provide companionship, routine, comfort, and sometimes gentle exercise. For most people, having pets does not mean they need to give them up. The key is understanding where fungal spores are most likely to build up and taking sensible precautions.
Key points
- Most people with aspergillosis do not need to avoid pets altogether.
- The main concern is usually not the animal itself, but dusty or damp materials such as hay, straw, bedding, feed, droppings, compost, and mouldy organic matter.
- Risk increases when bedding is left unchanged, becomes damp, or is disturbed during cleaning.
- People with allergic forms of aspergillosis, such as Allergic Bronchopulmonary Aspergillosis (ABPA), may react to fungal spores as allergens.
- People with Chronic Pulmonary Aspergillosis (CPA) may need to avoid heavy spore exposure because their lungs are already damaged.
- Good pet care, dry bedding, regular cleaning, and sensible respiratory protection can reduce avoidable exposure.
- The emotional and wellbeing benefits of pets can be considerable and should be included in any balanced decision.
Contents
- Why patients worry about pets
- What is the actual risk?
- Situations that may increase exposure
- Different risks in different forms of aspergillosis
- Practical advice for different pets
- Children’s pets and shared responsibility
- The benefits of pets
- Simple risk-reduction checklist
- Common questions
- When to seek medical advice
- Author and review information
- References
Why patients worry about pets
After being diagnosed with aspergillosis, many people start to look carefully at their home, garden, hobbies, and pets. This is understandable. Aspergillus is a mould that is found widely in the environment, and people may worry that a pet, cage, litter tray, hutch, or bedding could be making their lung condition worse.
The first reassurance is important: aspergillosis is not usually caught from pets in the way that some infections can be passed from animals to humans. The main issue is breathing in fungal spores from the environment. These spores are more likely to come from dusty, damp, or decaying organic material than from the animal itself.
A clean dog or cat in the home is very different from cleaning out a damp rabbit hutch, shaking mouldy hay, or disturbing old bedding in a poorly ventilated shed.
What is the actual risk?
The risk is mainly from inhaling airborne fungal spores. Aspergillus spores are very common in the environment. Most people breathe them in without becoming ill. Problems are more likely in people with asthma, cystic fibrosis, chronic lung disease, damaged lungs, or weakened immune systems.
Pet-related exposure is most likely when fungal spores build up in:
- Hay
- Straw
- Wood shavings or paper bedding
- Stored animal feed
- Damp hutches or cages
- Bird droppings
- Chicken coops
- Compost, soil, and rotting vegetation
- Dusty sheds or poorly ventilated outbuildings
The animal itself is usually not the main source of concern. The bigger issue is the environment around the animal, especially if it is damp, dusty, mouldy, or not cleaned regularly.
Situations that may increase exposure
Risk is not the same in every situation. Some pet-related activities are likely to create more airborne dust and spores than others.
| Situation | Likely level of concern | Why it matters |
|---|---|---|
| Living with a clean dog or cat | Low | The animal itself is not usually a major Aspergillus source. |
| Feeding pets from clean, dry food | Low | Low dust exposure if food is stored properly. |
| Changing a clean litter tray regularly | Low to moderate | Dust and odour may irritate airways; dusty litter may be a problem for some. |
| Handling hay for guinea pigs or rabbits | Moderate | Hay can contain fungal spores, especially if damp or poorly stored. |
| Cleaning cages or hutches with damp bedding | Moderate to higher | Disturbing bedding can release dust and spores into the air. |
| Cleaning bird cages or chicken coops | Higher | Droppings, feathers, bedding, and feed dust may build up in enclosed spaces. |
| Using mouldy hay, straw, or feed | Higher | Visible mould suggests fungal growth and avoidable exposure. |
| Cleaning old bedding after it has been neglected | Higher | Accumulated organic waste, dampness, and dust increase exposure when disturbed. |
Different risks in different forms of aspergillosis
Not all aspergillosis conditions carry the same type of risk. The reason for reducing exposure differs depending on the diagnosis.
Allergic Bronchopulmonary Aspergillosis (ABPA)
In Allergic Bronchopulmonary Aspergillosis, the main issue is allergic inflammation. The immune system reacts strongly to Aspergillus. Extra exposure to fungal spores may contribute to asthma symptoms, coughing, wheezing, mucus production, or mucus plugging in some people.
For people with ABPA, pet-related precautions are mainly about reducing exposure to fungal allergens from hay, bedding, damp cages, and dusty animal environments.
Severe Asthma with Fungal Sensitisation (SAFS)
Severe Asthma with Fungal Sensitisation is also an allergic-type condition. The concern is not usually that the pet will cause an infection, but that mould spores and other allergens may worsen asthma symptoms.
Chronic Pulmonary Aspergillosis (CPA)
Chronic Pulmonary Aspergillosis usually occurs in lungs that already have damage, cavities, scarring, bronchiectasis, or previous lung disease. In CPA, the concern is less about allergy and more about protecting vulnerable lungs from unnecessary heavy exposure to fungal spores.
There is limited evidence that ordinary pet ownership worsens CPA. However, avoiding heavy exposure to mouldy hay, bedding, compost, bird droppings, and dusty animal housing is sensible.
Aspergillus bronchitis
In Aspergillus bronchitis, Aspergillus may be present in the airways and contribute to cough, sputum, and airway inflammation. Heavy exposure to fungal spores may aggravate symptoms in some people, although this relationship is less well understood than in ABPA.
People with significant immunosuppression
People with severely weakened immune systems may need stricter precautions. This can include people who have had organ or stem cell transplants, people receiving intensive chemotherapy, and people on high-dose immunosuppressive treatment.
For these patients, the concern may include invasive fungal infection. They should follow advice from their specialist team about pets, gardening, compost, bird cages, chicken coops, and mouldy environments.
| Condition | Main concern | Practical message |
|---|---|---|
| Allergic Bronchopulmonary Aspergillosis (ABPA) | Allergic reaction to Aspergillus spores | Reduce exposure to dusty, mouldy, or damp materials. |
| Severe Asthma with Fungal Sensitisation (SAFS) | Asthma worsening from fungal allergens | Avoid mouldy bedding, dusty hay, and damp animal housing. |
| Chronic Pulmonary Aspergillosis (CPA) | Protecting already damaged lungs | Avoid heavy or repeated spore exposure where possible. |
| Aspergillus bronchitis | Airway irritation and possible symptom aggravation | Keep exposure to dust and mould as low as practical. |
| Severe immunosuppression | Risk of serious fungal infection | Follow specialist medical advice; extra precautions may be needed. |
Practical advice for different pets
Dogs
Dogs are usually low risk from an Aspergillus exposure point of view. The main precautions are general hygiene and avoiding large amounts of mud, damp bedding, or mouldy outdoor kennels.
- Wash hands after handling pets, especially before eating.
- Keep dog bedding clean and dry.
- Avoid letting damp or mouldy bedding accumulate.
- If cleaning a dusty kennel or outdoor area, consider wearing an FFP2 or FFP3 mask.
Cats
Cats are also usually low risk. Litter trays can produce dust and odour, which may irritate the airways in some people.
- Use low-dust litter where possible.
- Change litter regularly.
- Avoid letting trays become damp or heavily soiled.
- Ask someone else to clean the tray if you are very sensitive to dust or smells.
- Wash hands after cleaning litter trays.
Guinea pigs, rabbits, hamsters, and other small mammals
For small mammals, the animal is usually not the main issue. The bigger concern is hay, bedding, and cage cleaning.
- Use clean, dry bedding.
- Replace bedding frequently.
- Remove damp bedding promptly.
- Store hay in a dry place.
- Do not use visibly mouldy hay, straw, or feed.
- Avoid shaking hay or bedding indoors.
- Clean cages in a well-ventilated area.
- If possible, ask another family member to do major cage cleaning.
- Consider wearing an FFP2 or FFP3 mask when cleaning dusty bedding.
Birds and chickens
Bird cages and chicken coops can create more dust exposure than many other pets. Droppings, bedding, feathers, seed husks, and feed dust can accumulate, especially in enclosed or poorly ventilated spaces.
- Clean cages and coops regularly.
- Avoid allowing droppings and bedding to build up.
- Improve ventilation where possible.
- Store feed dry.
- Avoid sweeping dry dust if damp cleaning is possible.
- Wear respiratory protection if cleaning a dusty coop or cage.
- People with severe lung disease or significant immunosuppression should discuss this with their clinical team.
Fish tanks and aquariums
Fish tanks are usually low risk for Aspergillus exposure. The main issue is preventing mould around lids, filters, walls, or damp cupboards.
- Clean tanks and filters regularly.
- Check for mould around the tank, lid, or nearby wall.
- Avoid damp build-up in enclosed cupboards.
Reptiles
Reptile enclosures are usually low risk if well maintained. Damp substrates, mouldy wood, or poorly cleaned vivariums may increase exposure to mould and other microbes.
- Replace damp or mouldy substrate promptly.
- Keep enclosures clean and well ventilated.
- Wash hands after handling reptiles or cleaning enclosures.
Children’s pets and shared responsibility
Many family pets are cared for by children or teenagers. This can be a positive way to teach responsibility and empathy. However, routine jobs can be forgotten during busy periods, holidays, exams, illness, or changes in family routine.
For someone in the household with aspergillosis, asthma, bronchiectasis, or another chronic lung condition, it is helpful for an adult or another family member to check regularly that pet care is being maintained.
Family pet-care check
- Is the bedding clean and dry?
- Has damp bedding been removed?
- Is the hay free from visible mould?
- Is feed stored somewhere dry?
- Is the cage, hutch, or coop well ventilated?
- Is there a regular cleaning routine?
- Does the person cleaning the cage need help or a mask?
The aim is not to discourage children from caring for pets. It is to avoid a situation where bedding, hay, or droppings are left long enough to become damp, dusty, mouldy, or heavily contaminated. Neglect increases avoidable exposure.
The benefits of pets
Any decision about pets should include benefits as well as risks. For many people with long-term lung disease, pets are not just animals in the house. They are companions, sources of comfort, and part of daily life.
Companionship
Chronic illness can be isolating. Pets can provide company, reassurance, and a sense of normality, especially for people who live alone or spend long periods at home.
Mental health and wellbeing
Pets may help reduce loneliness, stress, and anxiety. Many people find that caring for an animal gives emotional support during difficult periods of illness.
Routine and purpose
Feeding, grooming, walking, and caring for pets can provide structure to the day. This can be particularly valuable when illness, retirement, or reduced mobility has changed a person’s usual routine.
Gentle activity
Dogs may encourage regular walking and time outdoors. Even small amounts of gentle activity can support physical and mental wellbeing when paced appropriately.
Family connection
Pets can bring families together. Children caring for pets may learn responsibility, while shared pet care can create positive family routines.
Simple risk-reduction checklist
- Keep cages, hutches, beds, and coops clean.
- Replace bedding regularly.
- Remove damp bedding promptly.
- Store hay, straw, and feed in a dry place.
- Do not use visibly mouldy hay, bedding, or feed.
- Avoid shaking dusty bedding indoors.
- Clean animal housing in a well-ventilated area.
- Ask another household member to do dusty cleaning tasks if possible.
- Consider an FFP2 or FFP3 mask for dusty cage, hutch, or coop cleaning.
- Wash hands after handling animals or cleaning cages.
- Keep pet equipment away from food preparation areas.
- Discuss individual risks with your clinical team if you are severely immunosuppressed.
Common questions
Do I need to get rid of my pet if I have aspergillosis?
Usually, no. Most people with aspergillosis do not need to give up their pets. The focus is usually on reducing exposure to mouldy, dusty, or damp materials around pets.
Can my dog or cat give me aspergillosis?
This is not the usual way aspergillosis develops. Aspergillus exposure usually comes from breathing in mould spores from the environment, such as soil, compost, damp buildings, hay, bedding, or decaying organic material.
Are guinea pigs safe?
Guinea pigs themselves are usually not the main concern. The more likely source of fungal spores is hay or bedding, especially if it is damp, mouldy, dusty, or left unchanged for too long. Keep bedding clean and dry, replace it frequently, and store hay properly.
Are birds or chickens more risky?
Bird cages and chicken coops can create more dust and organic waste exposure than many other pet environments. Regular cleaning, good ventilation, dry feed storage, and respiratory protection during dusty cleaning can reduce exposure.
Should I wear a mask when cleaning pet cages?
If the task is dusty, involves hay or bedding, or takes place in a poorly ventilated area, wearing an FFP2 or FFP3 mask may be sensible, particularly for people with asthma, Allergic Bronchopulmonary Aspergillosis, Chronic Pulmonary Aspergillosis, bronchiectasis, or reduced lung reserve.
What is the biggest pet-related risk?
The biggest avoidable risks are usually mouldy hay, damp bedding, accumulated droppings, poorly stored feed, and dusty cleaning of animal housing.
Are pets good for people with aspergillosis?
For many people, yes. Pets can provide companionship, routine, comfort, and encouragement to stay active. These benefits can be very important for people living with long-term lung disease.
When to seek medical advice
Contact your GP, respiratory team, or specialist team if:
- Your breathing becomes suddenly worse.
- You develop new or worsening wheeze, chest tightness, or breathlessness.
- You cough up blood.
- You develop fever, chest pain, or feel acutely unwell.
- Your asthma becomes difficult to control.
- You notice a clear pattern of worsening symptoms after cleaning cages, hutches, coops, or handling hay.
- You are severely immunosuppressed and are concerned about mould exposure.
If you are very breathless, coughing up significant amounts of blood, have chest pain, or feel seriously unwell, seek urgent medical help.
Author and review information
Audience: Patients, carers, families, and non-specialists.
Purpose: General educational information about pet ownership and environmental exposure in people with aspergillosis or related lung conditions.
Important note: This article does not replace medical advice. Individual risk varies depending on diagnosis, lung function, immune status, medications, and home environment. If you are unsure, discuss your situation with your clinical team.
Last reviewed: June 2026
References and further reading
- Centers for Disease Control and Prevention. Reducing Risk for Aspergillosis.
- NHS. Aspergillosis.
- NHS 111 Wales. Aspergillosis.
- National Aspergillosis Centre, Manchester University NHS Foundation Trust. About Aspergillosis.
- Centers for Disease Control and Prevention. Small Mammals: Healthy Pets, Healthy People.
- Asthma + Lung UK. Air pollution and allergies at home.
- Asthma and Allergy Foundation of America. Mold Allergy.
- Allergy UK. Asthma and Respiratory Allergy.
- Aspergillosis Patient Support
Healthy Eating Should Not Feel Like Punishment
Many people living with aspergillosis ask what they should eat. Unfortunately, the answer can seem confusing. One expert says eat less fat. Another says eat less sugar. Then come messages about protein, probiotics, supplements, fasting, gut health and the latest “superfood”.
This article takes a different approach. Rather than focusing on strict dietary rules, it explores what we know, what we still do not know, and how to build a way of eating that is realistic, enjoyable and sustainable while living with a long-term condition.
Healthy eating should not feel like punishment. It should feel like finding more foods you enjoy and fewer foods you later regret.
Important: follow personalised medical advice
If your doctor, specialist nurse or dietitian has recommended a specific diet for you, continue to follow that advice unless they recommend otherwise.
This article provides general information and does not replace personalised medical or dietary advice.
Some people with aspergillosis may need specialised dietary support because of weight loss, malnutrition, diabetes, kidney disease, liver disease, food allergies, coeliac disease, digestive disorders or medication-related side effects.
For some people, maintaining weight, strength and muscle mass may be more important than weight loss. Your healthcare team may recommend a different approach based on your individual circumstances.
Key points
- Healthy eating does not need to be perfect.
- Most dietary advice is less complicated than headlines suggest.
- Food should be enjoyable as well as nutritious.
- Plant foods remain one of the strongest foundations of a healthy diet.
- Many expensive health products offer little advantage over ordinary foods.
- Some people with aspergillosis experience gut symptoms related to illness, medication or other health conditions.
- Diet can support wellbeing but does not replace medical treatment.
Contents
- Why are we so confused about food?
- Healthy eating is not about perfection
- What does the evidence actually show?
- Food is more than nutrients
- The microbiome and fermented foods
- Healthy eating in a modern world
- Healthy eating in the real world
- Diet, gut symptoms and aspergillosis
- Practical ideas
- Common questions
- Resources and further reading
Why are we so confused about food?
Many patients tell us they no longer know what to believe about food. This is hardly surprising.
Over the years we have been told to avoid fat, then sugar, then carbohydrates. We have been encouraged to buy supplements, protein products, probiotics, wellness products and specialist diets. Meanwhile, researchers continue to discover new complexities in nutrition and human biology.
The problem is not that scientists know nothing. The problem is that health messages are often simplified into headlines while commercial interests compete for attention.
When someone is living with a chronic illness, those mixed messages can become exhausting.
The reassuring news is that the broad foundations of healthy eating have changed much less than many people realise.
Healthy eating is not about perfection
One of the biggest misconceptions about healthy eating is that every meal must be perfect.
Real life does not work that way. People have birthdays, holidays, stressful weeks, family gatherings, fatigue, illness and financial pressures.
A healthy diet is not built from one meal. It is built from hundreds and thousands of meals over months and years.
One takeaway meal does not undo a healthy lifestyle. One difficult week does not erase years of sensible habits.
The aim is consistency, not perfection.
Many people find that once they stop chasing perfection, healthy eating becomes much easier to maintain.
What does the evidence actually show?
Despite changing headlines, most major health organisations continue to recommend broadly similar eating patterns.
The strongest evidence supports diets that contain plenty of:
- vegetables
- fruit
- beans and lentils
- whole grains
- nuts and seeds
- adequate protein
- moderate amounts of minimally processed foods
This does not mean everyone must become vegetarian or vegan. It means that plant foods should form a larger part of everyday eating.
A useful summary is:
Eat mostly real foods, especially plant foods, and make the pattern sustainable.
Food is more than nutrients
One reason nutrition advice can be confusing is that food is far more complex than scientists once believed.
For many years, nutrition focused on individual nutrients such as fat, sugar, protein or vitamins. Today, we increasingly understand that foods work as complete packages.
An apple is not simply sugar. It also contains fibre, water, vitamins, minerals and plant compounds, all packaged in a structure that affects how it is digested.
Food also provides pleasure, culture, social connection and enjoyment. That is one reason why healthy eating should not feel like punishment.
The microbiome and fermented foods
One of the most exciting areas of modern research is the gut microbiome — the community of bacteria, fungi and other microorganisms that live in our digestive system.
Researchers now know that the microbiome influences digestion, immunity, inflammation and metabolism. There is also growing evidence that it may affect mood and sleep, although this research is still developing.
This has led to increasing interest in foods such as:
- kefir
- live yoghurt
- sauerkraut
- kimchi
- miso
- tempeh
The evidence is promising but still emerging. Fermented foods are not a miracle cure.
A useful way to think about them is that they may be another brick in building your wellbeing home, alongside exercise, sleep, social connection and good medical care.
If you enjoy fermented foods and tolerate them well, they may be a useful part of a varied diet. If they worsen symptoms such as bloating, reflux or diarrhoea, they may not suit you.
Healthy eating in a modern world
If healthy eating were simply a matter of knowing what was good for us, most of us would find it much easier.
The reality is that modern food environments are full of mixed messages. Many people genuinely want to improve their health but end up spending money, energy and effort on approaches that may not make much difference.
When good advice becomes marketing
Many health messages begin with good intentions.
Take protein as an example. As we get older, maintaining muscle mass becomes increasingly important. This is one reason why many people over the age of 60 are encouraged to pay more attention to protein intake.
That is sensible advice.
The difficulty comes when a useful health message becomes a marketing opportunity. Suddenly supermarket shelves fill with protein bars, protein cereals, protein biscuits, protein drinks, protein puddings and protein snacks.
Some may be useful in specific situations. Many are expensive. Some contain surprisingly large amounts of sugar, sweeteners, saturated fat or highly processed ingredients.
The important question is often not:
How can I buy more protein products?
but:
How can I include protein-containing foods more regularly?
For many people, foods such as eggs, yoghurt, milk, beans, lentils, fish, nuts, seeds, tofu and lean meat can answer that question perfectly well.
The same pattern appears repeatedly throughout nutrition. Foods become fashionable. Products are marketed aggressively. The simple message is often lost.
The foods we forget about
One consequence of modern food marketing is that ordinary foods can start to look uninteresting.
We hear about superfoods, supplements and specialist health products. Meanwhile, some of the most nutritious foods available are sitting quietly on supermarket shelves:
- oats
- beans
- lentils
- peas
- carrots
- cabbage
- apples
- potatoes
- eggs
- wholemeal bread
These foods rarely appear in glossy advertisements. Nobody is becoming rich by persuading people to eat more cabbage.
Yet foods like these have nourished populations for generations.
Health is rarely created by a single miracle food. It is usually created by patterns that are repeated day after day and year after year.
The sugar-to-salt problem
Many people trying to eat more healthily reduce sugar and then find themselves adding more salt.
This is understandable. Food still needs to be enjoyable, and salt is one of the easiest ways to make food taste more rewarding.
However, healthy eating should not simply mean replacing one flavour driver with another.
A useful alternative is to build flavour using herbs, spices, garlic, onions, tomatoes, mushrooms, vinegar, lemon juice, chilli, ginger, mustard, pepper and other naturally flavourful ingredients.
The goal is not bland food. The goal is delicious food that does not depend entirely on sugar, salt or highly processed flavourings.
The health halo problem
Food packaging often highlights one positive feature: high protein, low fat, natural, gut friendly, organic, gluten free or source of vitamins.
The claim may be true, but it only tells part of the story.
A high-protein biscuit is still a biscuit. A low-fat dessert may still contain a large amount of sugar. A vitamin-fortified snack may still be highly processed.
It is often more useful to look at the overall food rather than a single headline claim.
Healthy eating in the real world
Perhaps the biggest problem with many nutrition articles is that they assume everyone has the same life.
They assume everyone enjoys cooking. They assume everyone has plenty of energy. They assume everyone has disposable income.
For many people living with aspergillosis, none of those assumptions are true.
Fatigue, breathlessness, disability, caring responsibilities and financial pressures can all affect what ends up on the plate.
That is why healthy eating should be realistic. Healthy eating should fit around your life, not the other way around.
You do not have to cook everything from scratch
There is a common belief that healthy eating means preparing every meal from fresh ingredients.
In reality, many convenient foods can be part of a healthy diet.
Frozen vegetables are still vegetables. Frozen fruit is still fruit. Tinned beans are still beans. Microwave rice is still rice. Wholemeal bread is still bread. Plain yoghurt is still yoghurt. Tinned fish is still fish.
These foods can save time, reduce waste and often cost less than fresh alternatives.
Healthy eating does not have to be expensive
Many heavily marketed health foods are expensive. Protein bars, specialist snacks, supplements and wellness products often cost far more than ordinary foods.
Some of the most nutritious foods available are also among the cheapest. Oats, beans, lentils, potatoes, carrots, cabbage, frozen vegetables, eggs and wholemeal bread can provide good nutrition at a modest cost.
Healthy eating is not about buying expensive products. It is about building meals from foods that provide good nutrition at a price you can afford.
If energy is limited, simplify
Many people with aspergillosis experience fatigue. On difficult days, preparing a complicated meal may simply not be realistic.
That is perfectly okay. Simple meals are still meals.
- beans on wholemeal toast
- soup and bread
- yoghurt and fruit
- a baked potato with beans
- an omelette with vegetables
- tinned fish with salad
- microwave rice with beans and vegetables
- porridge with fruit
Healthy eating does not need to be complicated to be effective.
A simple meal that you can manage is usually better than an ideal meal that never gets made.
The goal is not dietary perfection. The goal is to build a way of eating that works in the life you actually have.
If you are losing weight, the advice may be different
Not everyone needs to lose weight.
Some people with chronic pulmonary aspergillosis (CPA), severe lung disease or other long-term illnesses struggle to maintain their weight and muscle mass.
For these individuals, increasing calories and protein may be more important than restricting foods.
If you are losing weight unintentionally, have a poor appetite, or are becoming weaker, discuss this with your healthcare team. A dietitian may be able to help.
Diet, gut symptoms and aspergillosis
Many people living with aspergillosis report digestive symptoms at some stage.
These may include:
- bloating
- reflux or indigestion
- nausea
- abdominal discomfort
- altered bowel habits
- diarrhoea or constipation
- reduced appetite
There can be many possible causes. In some people, symptoms may be related to medicines used to manage aspergillosis or associated conditions. Antifungal drugs, antibiotics, steroids and other medicines can sometimes affect the digestive system. Reduced activity, stress, infection, inflammation and changes in eating patterns may also contribute.
There is currently no proven “aspergillosis diet” that treats aspergillosis itself.
Good nutrition can support general health, energy, muscle strength and recovery, but it should be viewed as complementary to medical treatment, not an alternative.
Do not alter prescribed treatment without medical advice
Do not stop or change antifungal medicines, steroids, biologics, inhalers, antibiotics or other prescribed treatments because of diet advice without discussing this with your healthcare team.
If you think a medicine is causing digestive symptoms, report this to your doctor, specialist nurse or pharmacist. They may be able to adjust timing, check for interactions, investigate symptoms or consider alternatives where appropriate.
Practical ideas
Healthy eating does not have to mean changing everything at once. Small changes are often more sustainable.
- Add one extra portion of vegetables to a meal.
- Choose wholegrain bread, oats, brown rice or wholewheat pasta more often.
- Add beans, lentils or chickpeas to soups, stews, curries or pasta sauces.
- Keep fruit visible and easy to reach.
- Use frozen vegetables when energy is low.
- Try live yoghurt or kefir if you enjoy fermented foods and tolerate them well.
- Replace some packaged snacks with fruit, nuts, yoghurt or wholegrain options.
- Cook extra portions when you have energy and freeze them for lower-energy days.
For people who are underweight or losing weight, these ideas may need adapting to include more calories and protein. A dietitian can help with this.
Common questions
Can diet treat aspergillosis?
No specific diet has been proven to treat aspergillosis. Antifungal medicines, steroids, biologics, inhalers, monitoring and specialist care may all be important depending on the type of aspergillosis. Diet can support general health but should not replace medical treatment.
Should I cut out sugar completely?
Most people do not need to cut out sugar completely. It is more useful to reduce frequent sugary drinks, sweets, cakes and biscuits, while enjoying naturally sweet foods such as fruit.
Should I cut out fat?
No. The body needs some fat. The source matters. Nuts, seeds, olive oil, oily fish and avocados contain healthier fats. It is sensible to limit large amounts of saturated fat from highly processed foods, fatty meats, butter, cream and pastries.
Should I eat more protein as I get older?
Many older adults need to pay attention to protein because it helps support muscle mass and strength, especially alongside physical activity. This does not necessarily mean buying protein bars or protein drinks. Ordinary foods such as beans, lentils, eggs, fish, yoghurt, milk, cheese, tofu, nuts, seeds and lean meat can all contribute protein.
Are fermented foods safe for people with aspergillosis?
Many fermented foods are safe for most people and may support gut health. Choose foods that are properly prepared and stored. Avoid homemade ferments that show visible mould or smell abnormal. If you are severely immunocompromised, ask your clinical team for individual advice before using probiotic supplements or unusual fermented products.
Do I need supplements?
Not necessarily. Supplements are useful when there is a clear reason, such as deficiency or specific medical advice. They are not a substitute for a varied diet. Check with a clinician or pharmacist before starting high-dose supplements or herbal products.
What if healthy eating feels too difficult?
Start small. Add one useful food rather than trying to change everything. For example, add fruit to breakfast, vegetables to dinner, or beans to soup. Small changes repeated often can matter more than short bursts of perfection.
When should I seek medical advice?
Ask your GP, specialist nurse, pharmacist or dietitian for advice if you are losing weight without trying, have persistent diarrhoea, vomiting, reflux or abdominal pain, have blood in your stool, are struggling to maintain weight or muscle strength, or think your medication may be causing gut symptoms.
Final thought
Food should not become another source of guilt for people already managing a long-term condition.
A good diet is not about perfection, punishment or expensive products. It is about building a pattern of eating that helps you feel as well as possible, supports your body over time, and still allows you to enjoy your meals.
Most people do not need a perfect diet. They need a way of eating that is good enough, enjoyable enough and sustainable enough to become part of normal life.
Resources and further reading
- NHS: The Eatwell Guide
- NHS: Eating a balanced diet
- NHS: Vitamin D
- British Dietetic Association: Healthy eating
- British Dietetic Association: Vitamin D
- British Dietetic Association: Protein
- World Health Organization: Healthy diet
- BMJ: Ultra-processed food exposure and adverse health outcomes
- Aspergillosis.org: Patient information and support
Author: Aspergillosis.org patient information team
Reviewed by: To be reviewed by clinical team before publication
Last reviewed: June 2026
Disclaimer: This article is for general information only and does not replace advice from your own healthcare team.
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Understanding Lung Function in Aspergillosis and Asthma
Key points
- Lung function tests show how well your lungs are working, not simply how damaged they look.
- “60% lung function” usually means 60% of the predicted value for someone of your age, sex and height.
- It does not mean 40% of your lungs have stopped working.
- Everyone loses some lung function naturally with age.
- For many people with aspergillosis or asthma, the trend over time matters more than one single result.
- Successful treatment often means stabilising lung function and preventing further decline.
Contents
- What are lung function tests?
- What does a percentage result mean?
- Lung function as breathing reserve
- Do we naturally lose lung function with age?
- Important lung function results
- What patterns are seen in aspergillosis?
- Why scans and lung function do not always match
- Can treatment stop lung function getting worse?
- When to seek medical help
- Common questions
What are lung function tests?
Lung function tests, also called breathing tests or pulmonary function tests, measure how well your lungs are working.
They can help doctors understand:
- how much air you can breathe out,
- how quickly you can empty your lungs,
- whether your airways are narrowed,
- whether your lungs are restricted or stiff,
- how well oxygen passes from the lungs into the blood.
These tests do not diagnose aspergillosis by themselves. Instead, they are one part of the overall picture, alongside symptoms, CT scans, blood tests, sputum tests, oxygen levels and how active you are day to day.
What does a percentage result mean?
Patients are often told things like:
“Your lung function is 65%.”
This can sound frightening, but it is often misunderstood.
A percentage result usually means your result compared with the value expected for a healthy person of the same:
- age,
- sex,
- height,
- and sometimes ethnic background, depending on the reference system used.
So, if your FEV1 is 65% predicted, it means your measured FEV1 is 65% of the value expected for someone like you.
It does not mean:
- 65% of your lungs are working,
- 35% of your lungs have died,
- you have lost 35% of your life expectancy,
- or that your condition will definitely keep getting worse.
Lung function as breathing reserve
A helpful way to think about lung function is as breathing reserve.
Everyone becomes breathless if they work hard enough. Lung function affects how soon that breathlessness appears.
| Activity | Someone with good breathing reserve | Someone with reduced breathing reserve |
|---|---|---|
| Sitting quietly | Comfortable | Usually comfortable |
| Walking around the house | Comfortable | Usually manageable |
| Shopping | Comfortable or mildly breathless | May need to slow down or pause |
| Climbing stairs | Mildly breathless | More likely to become breathless |
| Walking uphill | Breathless with effort | Breathless sooner and may need rests |
This is why two people with the same lung function percentage can feel very different. Breathlessness is also affected by fitness, weight, muscle strength, heart health, asthma control, mucus, anxiety, anaemia and recent infections.
Do we naturally lose lung function with age?
Yes. Lung function normally peaks in early adulthood and then gradually declines over time.
This happens because of natural changes in:
- lung elasticity,
- the chest wall,
- respiratory muscles,
- and small airways.
However, predicted lung function values already take age into account. This means a 70-year-old is not being compared with a healthy 25-year-old. They are being compared with expected values for someone of similar age, sex and height.
This is why the trend over time is often more useful than a single number.
| Year | FEV1 | Possible interpretation |
|---|---|---|
| 2022 | 64% | Relatively stable |
| 2023 | 63% | |
| 2024 | 65% | |
| 2025 | 62% |
A person may worry about being “only 62%”, while their respiratory team may be reassured that the result has remained stable for several years.
Important lung function results
FEV1
FEV1 stands for Forced Expiratory Volume in One Second.
It measures how much air you can blow out forcefully in the first second after taking a deep breath.
This is often the number people mean when they say, “My lung function is 60%.”
FEV1 is often reduced when airways are narrowed, as in asthma, chronic obstructive pulmonary disease (COPD), bronchiectasis or mucus plugging.
FVC
FVC stands for Forced Vital Capacity.
It measures the total amount of air you can blow out after taking the deepest breath possible.
FVC may be reduced if the lungs cannot expand fully, if there is scarring, restriction, muscle weakness, poor test technique, or if air becomes trapped in the lungs.
FEV1/FVC ratio
The FEV1/FVC ratio compares how much air you blow out in the first second with the total amount you can blow out.
A low ratio usually suggests airflow obstruction. This is common in asthma, COPD and some people with bronchiectasis.
TLCO or DLCO
TLCO or DLCO is often called gas transfer.
It measures how well oxygen passes from the air sacs in the lungs into the bloodstream.
Gas transfer may be reduced by scarring, emphysema, blood vessel problems in the lungs, anaemia, or other lung damage. Sometimes spirometry looks fairly good but gas transfer is reduced, which can help explain breathlessness.
What patterns are seen in aspergillosis?
There is no single “typical” lung function result for aspergillosis patients.
Aspergillosis often develops in people who already have asthma, bronchiectasis, previous tuberculosis, chronic obstructive pulmonary disease, sarcoidosis, prior lung surgery or other lung conditions. This means lung function varies widely from person to person.
Allergic bronchopulmonary aspergillosis (ABPA)
Allergic bronchopulmonary aspergillosis is an allergic inflammatory reaction to Aspergillus, usually in people with asthma or cystic fibrosis.
Lung function may show:
- airflow obstruction,
- reduced FEV1,
- fluctuation during flares,
- improvement after treatment,
- or gradual decline if inflammation and mucus plugging repeatedly damage the airways.
Chronic pulmonary aspergillosis (CPA)
Chronic pulmonary aspergillosis usually occurs in lungs that have already been damaged by another condition.
Lung function may show:
- reduced breathing reserve,
- reduced FVC if there is scarring or volume loss,
- reduced gas transfer,
- or surprisingly preserved spirometry despite abnormal CT scans.
In CPA, stability can be a very positive treatment outcome.
Aspergillus bronchitis
Some people have chronic Aspergillus infection or colonisation in the airways with cough and sputum production.
Symptoms may be troublesome even when lung function changes are modest. This is one reason doctors do not rely on lung function tests alone.
Asthma with Aspergillus sensitisation
Some people with asthma are sensitised to Aspergillus without meeting criteria for ABPA.
Their lung function may vary depending on asthma control, airway inflammation, triggers, inhaler use and recent infections.
Why scans and lung function do not always match
Patients are sometimes told:
“Your CT scan shows quite a lot of damage, but your lung function is better than expected.”
This can happen because CT scans and lung function tests measure different things.
A CT scan shows what the lungs look like. It can show bronchiectasis, scarring, cavities, mucus plugging, nodules or areas of collapse.
Lung function tests show how the lungs work overall.
The lungs have a large reserve capacity. If some areas are damaged but other areas remain healthy, the healthy areas can often compensate. This is why a scan can look alarming while lung function remains better than expected.
The opposite can also happen. A scan may look only mildly abnormal, but the person may feel very breathless because of asthma, small airways disease, poor gas transfer, deconditioning, anaemia, heart disease, anxiety or muscle weakness.
Can treatment stop lung function getting worse?
For many aspergillosis and asthma patients, one of the main aims of treatment is to preserve lung function.
Successful treatment does not always mean lung function returns to normal. It may mean:
- fewer flare-ups,
- less inflammation,
- less mucus plugging,
- fewer infections,
- better symptoms,
- stable CT scans,
- and little or no further decline in lung function.
In allergic bronchopulmonary aspergillosis, treatment aims to reduce inflammation and prevent repeated episodes that can damage the airways.
In chronic pulmonary aspergillosis, antifungal treatment often aims to slow or stop progression, reduce symptoms and preserve remaining lung function.
In asthma, good control with inhalers, biologics where appropriate, trigger reduction and treatment of associated conditions can reduce exacerbations and protect lung health.
For many patients, hearing that lung function is “stable” may sound disappointing. In long-term lung disease, stability is often a very good result.
Small changes are not always meaningful
Lung function tests require effort and technique. Results can vary from day to day.
A small change may reflect:
- how well the test was performed,
- tiredness,
- recent infection,
- asthma control,
- mucus,
- time of day,
- or normal measurement variability.
This is why clinicians look for sustained patterns rather than reacting to every small rise or fall.
Questions to ask your respiratory team
- Which result are we talking about: FEV1, FVC, ratio or gas transfer?
- Is my result stable compared with previous tests?
- Is the pattern obstructive, restrictive, mixed or mainly gas transfer-related?
- Does this result explain my symptoms?
- Could asthma, mucus plugging or infection be affecting today’s result?
- What result would make you concerned about deterioration?
- What can I do to help preserve my lung function?
When to seek medical help
Seek medical advice if you notice:
- a clear and persistent worsening of breathlessness,
- breathlessness at rest or with minimal activity,
- new or worsening wheeze,
- coughing up blood,
- fever or signs of infection,
- new chest pain,
- oxygen levels lower than usual if you monitor them,
- or a sudden drop in exercise tolerance.
Seek urgent medical help if breathlessness is severe, sudden, associated with chest pain, blue lips, confusion, fainting, or oxygen levels are dangerously low compared with your usual readings.
Common questions
What does “60% lung function” mean?
It usually means one of your lung function results is 60% of the value predicted for someone of your age, sex and height. It does not mean only 60% of your lungs are working.
Is there a normal amount of lung function for aspergillosis patients?
No. Aspergillosis patients vary widely. Some have normal or near-normal lung function. Others have severe impairment, often because aspergillosis has developed on top of another lung condition.
Does lower lung function mean I will be more breathless?
Often, yes. Lower lung function usually means less breathing reserve, so you may become breathless with less effort. However, symptoms also depend on fitness, weight, muscle strength, asthma control, mucus, oxygen levels and other health conditions.
Can my lung function improve?
Sometimes. Lung function may improve if asthma control improves, inflammation settles, mucus plugging clears, infection is treated, or fitness improves. Permanent scarring and bronchiectasis are less likely to reverse.
Is stable lung function a good result?
Yes. In long-term lung disease, stable lung function over months or years can be a very positive sign that treatment and monitoring are helping to prevent further deterioration.
Why do I feel worse if my lung function has not changed?
Breathlessness and fatigue can worsen for many reasons, including infection, mucus, asthma flare, anaemia, heart problems, medication side effects, poor sleep, anxiety, pain or loss of fitness. Lung function is important, but it is not the only explanation for symptoms.
Summary
Lung function results are useful, but they need careful interpretation.
The number is not a simple measure of how much lung you have left. It is better understood as a measure of breathing reserve compared with what would be expected for someone like you.
For people with aspergillosis and asthma, the most important question is often not “What is my lung function today?” but “Is my lung function stable over time?”
Many patients live active and fulfilling lives with lung function results that sound worrying when expressed as a percentage. The result matters, but so do symptoms, CT scans, oxygen levels, exercise ability, treatment response and the overall trend.
In long-term lung disease, stability is not failure. Stability can be success.
References and further reading
Author and review information
Written for: aspergillosis.org
Intended audience: People living with aspergillosis, asthma, bronchiectasis or other long-term lung conditions, and their families.
Clinical note: This article is for general education and should not replace advice from your own respiratory team.
Last reviewed: June 2026
Professional Aspergillosis Update: May 2026
Audience: respiratory physicians, infectious diseases physicians, clinical microbiologists, haematologists, pharmacists, specialist nurses, laboratory scientists and researchers with an interest in aspergillosis.
Contents
Key messages
- Isavuconazole therapeutic drug monitoring may have a selective role. Although isavuconazole is usually more predictable than voriconazole, real-world pharmacokinetic variability remains clinically relevant in some patients.
- Posaconazole prophylaxis should not automatically be avoided with midostaurin. The interaction is real, but clinical consequences may often be manageable with careful monitoring.
- Surrogate azole susceptibility testing has limits. Voriconazole gradient diffusion testing may help screen for broader azole resistance, but it should not replace direct susceptibility testing where treatment decisions depend on the result.
- Invasive fungal sinusitis remains a high-mortality emergency in haematological malignancy. Early tissue diagnosis, ENT involvement and multidisciplinary management remain central.
- Non-fumigatus Aspergillus species are becoming more important research targets. New CRISPR-Cas9 tools for Aspergillus calidoustus may support future work on virulence and antifungal resistance.
Top papers this month
1. Isavuconazole pharmacokinetics and pharmacodynamics in real-world practice
Guidi M, Couchepin J, Reinhold I, Kronig I, Neofytos D, Schreiber PW, André P, Buclin T, Lamoth F.
Characterization of isavuconazole pharmacokinetics and pharmacodynamics in a real-life cohort.
JAC Antimicrobial Resistance. 2026;8(3):dlag071.
PMID: 42088097
Why this paper was selected
Isavuconazole is increasingly used for invasive aspergillosis because of its favourable safety profile and generally more predictable pharmacokinetics compared with voriconazole. This study provides important real-world evidence that clinically relevant interpatient variability still occurs and that therapeutic drug monitoring may have a role in selected patients.
Key findings
- Isavuconazole showed relatively predictable pharmacokinetics overall.
- Clinically relevant variability in drug exposure was still observed between patients.
- Therapeutic drug monitoring identified patients with atypically low or high exposure.
- Exposure relative to fungal minimum inhibitory concentration may be more informative than plasma concentration alone.
- No strong concentration-dependent toxicity signal was observed within the exposure range studied.
Clinical significance
This paper challenges the assumption that isavuconazole therapeutic drug monitoring is rarely useful. While the findings do not justify universal routine monitoring, they support selective monitoring in complex patients, particularly where there is treatment failure, suspected malabsorption, significant drug interactions, unusual body composition, long-term therapy, or infection with isolates showing elevated minimum inhibitory concentrations.
Implications for practice
Classification: Important but not yet practice changing.
The study supports a more individualised approach to isavuconazole use. It also reinforces the direction of travel in antifungal stewardship: interpreting drug exposure alongside fungal susceptibility rather than considering plasma concentrations in isolation.
Evidence assessment
Evidence quality: Moderate. The real-world dataset and pharmacokinetic-pharmacodynamic modelling strengthen the evidence base, but the observational design limits causal inference and definitive exposure targets were not established.
Editorial assessment
This is one of the most clinically relevant antifungal pharmacology papers in this update. It does not establish mandatory isavuconazole monitoring, but it provides a strong argument for selective therapeutic drug monitoring in high-risk or complex aspergillosis patients.
2. Managing posaconazole and midostaurin interactions in FLT3-mutated AML
Joisten CS, Mellinghoff SC, Seidel D, Müller C, Müller-Ohrem C, Kreuzer K-A, Frenzel LP, Simon F, Hallek M, Koehler P, Cornely OA, Stemler J.
Clinical impact of potential drug-drug interactions between midostaurin and posaconazole in FLT3-mutated AML.
Antimicrobial Agents and Chemotherapy. 2026;70(6):e01951-25.
PMID: 42118097
Why this paper was selected
Posaconazole prophylaxis is central to prevention of invasive aspergillosis in patients undergoing intensive acute myeloid leukaemia treatment. Midostaurin is metabolised through CYP3A4, and posaconazole is a potent CYP3A4 inhibitor. This study addresses a common real-world dilemma: whether this interaction should alter antifungal prophylaxis practice.
Key findings
- The pharmacokinetic interaction between posaconazole and midostaurin was confirmed.
- Clinical toxicity appeared less severe than theoretical concerns might suggest.
- Many patients were able to receive both agents without major treatment-limiting toxicity.
- Individual variability in exposure and tolerability remained important.
- The findings support continued attention to monitoring rather than automatic avoidance of posaconazole.
Clinical significance
This paper is important because it addresses an immediate bedside decision. Avoiding posaconazole because of interaction concerns may leave high-risk acute myeloid leukaemia patients vulnerable to invasive aspergillosis. The study suggests that the interaction is clinically manageable in many patients when appropriate monitoring and multidisciplinary oversight are in place.
Implications for practice
Classification: Important but not yet practice changing.
The paper supports continued use of posaconazole prophylaxis where clinically indicated, with careful monitoring for toxicity and close collaboration between haematology, infectious diseases, microbiology and pharmacy teams.
Evidence assessment
Evidence quality: Moderate. The study is clinically relevant and real-world, but observational. It does not establish definitive dose-adjustment protocols or replace existing guideline recommendations.
Editorial assessment
The key message is that proven antifungal prophylaxis should not be abandoned solely because of theoretical interaction concerns. The interaction is real, but careful monitoring is generally preferable to withholding protection against invasive aspergillosis in a very high-risk group.
3. Can voriconazole susceptibility predict isavuconazole or posaconazole susceptibility?
Vahedi-Shahandashti R, Nickel A-S, Eisele D, Lass-Flörl C; ISHAM Working Group Member of Intrinsic Antifungal Resistance.
Can voriconazole gradient diffusion testing results be extrapolated to isavuconazole and posaconazole in Aspergillus spp.? Comparative analysis with CLSI broth microdilution and cyp51A gene sequencing.
Antimicrobial Agents and Chemotherapy. 2026;70(6):e01813-25.
PMID: 42138696
Why this paper was selected
Azole resistance in Aspergillus species is a growing problem, but not all laboratories can perform comprehensive susceptibility testing for every triazole. This paper asks whether voriconazole gradient diffusion testing can be used as a practical surrogate marker for broader azole susceptibility.
Key findings
- Voriconazole susceptibility often correlated with broader azole susceptibility patterns.
- Elevated voriconazole minimum inhibitory concentrations frequently corresponded with reduced isavuconazole susceptibility.
- Prediction of posaconazole susceptibility was less reliable.
- Discordant susceptibility profiles occurred, particularly among resistant isolates.
- cyp51A sequencing helped explain many resistance patterns but did not account for all phenotypes.
Clinical significance
The study supports voriconazole gradient diffusion testing as a useful first-line screening approach, especially where full reference testing is not immediately available. However, it also highlights a critical limitation: susceptibility to one triazole cannot be assumed to guarantee susceptibility to another.
Implications for practice
Classification: Important but not yet practice changing.
Voriconazole gradient diffusion testing may help identify isolates that require further investigation, but it should not replace direct isavuconazole or posaconazole susceptibility testing where treatment decisions depend on accurate results.
Evidence assessment
Evidence quality: Moderate to high for a laboratory diagnostic study. The use of CLSI broth microdilution and cyp51A sequencing strengthens the analysis, but clinical outcome data were not assessed.
Editorial assessment
This is a practical paper for clinical mycology laboratories. The main message is that surrogate azole testing can support screening and stewardship, but definitive treatment decisions should still be based on agent-specific susceptibility testing and molecular resistance analysis where available.
4. Invasive fungal sinusitis in haematological malignancy
Athni TS, Strauch CB, Kovac V, Arbona-Haddad E, Villa IP, Gupta S, Aleissa MM, Liakos AD, Tong A, Vedula RS, Maxfield AZ, Bergmark RW, Sherman AC.
Invasive fungal sinusitis in patients with hematological malignancies: a 20-year study from a tertiary academic US hospital system.
Open Forum Infectious Diseases. 2026;13(6):ofag304.
PMID: 42238379
Why this paper was selected
Invasive fungal sinusitis is a severe but less commonly discussed manifestation of invasive mould disease. In haematological malignancy, delayed recognition can lead to orbital, intracranial and fatal complications. This 20-year cohort provides useful long-term clinical insight.
Key findings
- Aspergillus species and Mucorales were the dominant pathogens.
- Mortality remained substantial despite modern antifungal therapy and supportive care.
- Early imaging, endoscopic assessment, tissue biopsy and histopathology remained central to diagnosis.
- Successful management frequently required combined medical and surgical approaches.
- Multidisciplinary care involving haematology, infectious diseases, ENT, microbiology and radiology was essential.
Clinical significance
This study reinforces that invasive aspergillosis is not solely a pulmonary disease. Sinonasal invasive fungal disease remains an emergency in profoundly immunocompromised patients. Distinguishing aspergillosis from mucormycosis is particularly important because antifungal treatment choices differ substantially.
Implications for practice
Classification: Important but not practice changing.
The paper reinforces existing best practice: early suspicion, urgent ENT involvement, tissue diagnosis, prompt antifungal therapy and multidisciplinary management.
Evidence assessment
Evidence quality: Moderate. The long observation period and detailed clinical experience are strengths, but the retrospective single-system design limits causal conclusions.
Editorial assessment
This paper is a useful reminder that early recognition remains one of the strongest determinants of outcome in invasive fungal disease. Persistent or atypical sinus symptoms in high-risk haematology patients should prompt urgent assessment rather than routine treatment as uncomplicated bacterial sinusitis.
Important development
5. Invasive mould infections in transplant recipients
Sudhaharan S, Pamidimukkala U, Bojja S, Raju DSB, Kk R, Gopal PSS.
Invasive mold infections among transplant recipients: a single-center observational study.
Journal de Mycologie Médicale / Journal of Medical Mycology. 2026;36(2):101629.
DOI: 10.1016/j.mycmed.2026.101629
Why this paper was selected
Transplant recipients remain a key high-risk population for invasive aspergillosis and other invasive mould infections. This observational study provides contemporary real-world data on presentation, diagnosis, microbiology, treatment and outcomes in a transplant centre.
Key findings
- Aspergillus species remained the predominant mould pathogen.
- Pulmonary disease was the most common presentation.
- Diagnosis required multimodal assessment combining clinical, radiological and mycological data.
- Invasive mould infections remained associated with substantial morbidity and mortality.
- Earlier diagnosis was associated with more favourable outcomes.
Clinical significance
The study confirms rather than changes current understanding. Its main value is as a contemporary reminder that invasive aspergillosis remains a major threat in transplantation despite advances in prophylaxis, diagnostics and antifungal treatment.
Implications for practice
Classification: Important but not practice changing.
The findings support ongoing vigilance, rapid investigation pathways, early multidisciplinary input and antifungal stewardship in transplant programmes.
Evidence assessment
Evidence quality: Moderate. Real-world applicability is useful, but the single-centre observational design and modest sample size limit generalisability.
Editorial assessment
This paper does not introduce a new management strategy, but it reinforces an enduring message: invasive aspergillosis outcomes in transplant recipients remain strongly dependent on early recognition and timely treatment.
Research horizon
6. CRISPR-Cas9 gene editing in Aspergillus calidoustus
Hollomon JM, Dahlstrom KM.
CRISPR-Cas9-mediated targeted gene deletion in Aspergillus calidoustus, a non-model environmental mold.
Microbiology Spectrum. 2026;14(6):e03899-25.
PMID: 42112836
Why this paper was selected
Most molecular understanding of pathogenic Aspergillus species comes from Aspergillus fumigatus. This study establishes a CRISPR-Cas9 gene-editing system for Aspergillus calidoustus, an emerging opportunistic mould with clinical relevance and reduced susceptibility to some antifungals.
Key findings
- The authors successfully developed a CRISPR-Cas9 platform for targeted gene deletion in A. calidoustus.
- The system provides a method for functional genetic studies in a previously less tractable species.
- The platform may support future research into virulence, environmental adaptation, antifungal resistance and novel drug targets.
Clinical significance
There is no immediate clinical application. However, the study is important as enabling science. As non-fumigatus Aspergillus species are increasingly recognised in clinical practice, tools that allow their biology to be studied directly may become increasingly valuable.
Implications for practice
Classification: Early-stage research requiring further validation.
This paper does not alter clinical management, diagnostics or guidelines. Its value lies in supporting future translational research.
Editorial assessment
This is a foundational research paper. It will not change patient care today, but it may help build the scientific infrastructure needed to understand emerging mould pathogens and their resistance mechanisms over the next decade.
Clinical pearl
7. Primary traumatic cutaneous aspergillosis caused by Aspergillus terreus
Ing SK, Lee YH, Tan YY, Aziz MBA, Chang AKW.
Primary traumatic cutaneous aspergillosis of the hand caused by Aspergillus terreus following a mould-contaminated penetrating injury.
Medical Mycology Case Reports. 2026;52:100798.
PMID: 42237979
Why this case was noted
This case report describes primary traumatic cutaneous aspergillosis of the hand caused by Aspergillus terreus following a mould-contaminated penetrating injury.
Clinical take-home points
- Aspergillosis is not always acquired through inhalation.
- Direct traumatic inoculation can cause localised Aspergillus infection.
- Persistent or atypical wounds following mould-contaminated trauma should prompt consideration of fungal infection.
- Tissue sampling is essential for diagnosis.
- Species-level identification matters because Aspergillus terreus is intrinsically resistant to amphotericin B.
Editorial assessment
This is not a practice-changing paper, but it is a useful educational case. It broadens clinical awareness beyond pulmonary aspergillosis and highlights the importance of early tissue diagnosis when wounds behave unexpectedly after contaminated trauma.
Overall editorial summary
The May 2026 literature contains several papers that are useful for clinicians and laboratory professionals working in aspergillosis and invasive mould disease. The strongest clinical themes are antifungal stewardship, drug exposure, azole resistance, and the continued importance of early diagnosis in high-risk populations.
The isavuconazole pharmacokinetic-pharmacodynamic study and the midostaurin-posaconazole interaction paper are particularly relevant because they address practical treatment decisions. The azole susceptibility study is highly relevant to clinical mycology laboratories and reinforces the need for careful interpretation of surrogate resistance testing. The invasive fungal sinusitis and transplant studies reinforce a familiar but important message: outcomes remain closely linked to early recognition, tissue diagnosis where appropriate, and multidisciplinary management.
Finally, the CRISPR-Cas9 paper and traumatic cutaneous aspergillosis case illustrate the breadth of modern aspergillosis research, from molecular tools for emerging moulds to unusual clinical presentations outside the respiratory tract.
References
- Guidi M, Couchepin J, Reinhold I, Kronig I, Neofytos D, Schreiber PW, André P, Buclin T, Lamoth F. Characterization of isavuconazole pharmacokinetics and pharmacodynamics in a real-life cohort. JAC Antimicrobial Resistance. 2026;8(3):dlag071. PMID: 42088097
- Joisten CS, Mellinghoff SC, Seidel D, Müller C, Müller-Ohrem C, Kreuzer K-A, Frenzel LP, Simon F, Hallek M, Koehler P, Cornely OA, Stemler J. Clinical impact of potential drug-drug interactions between midostaurin and posaconazole in FLT3-mutated AML. Antimicrobial Agents and Chemotherapy. 2026;70(6):e01951-25. PMID: 42118097
- Vahedi-Shahandashti R, Nickel A-S, Eisele D, Lass-Flörl C; ISHAM Working Group Member of Intrinsic Antifungal Resistance. Can voriconazole gradient diffusion testing results be extrapolated to isavuconazole and posaconazole in Aspergillus spp.? Comparative analysis with CLSI broth microdilution and cyp51A gene sequencing. Antimicrobial Agents and Chemotherapy. 2026;70(6):e01813-25. PMID: 42138696
- Athni TS, Strauch CB, Kovac V, Arbona-Haddad E, Villa IP, Gupta S, Aleissa MM, Liakos AD, Tong A, Vedula RS, Maxfield AZ, Bergmark RW, Sherman AC. Invasive fungal sinusitis in patients with hematological malignancies: a 20-year study from a tertiary academic US hospital system. Open Forum Infectious Diseases. 2026;13(6):ofag304. PMID: 42238379
- Sudhaharan S, Pamidimukkala U, Bojja S, Raju DSB, Kk R, Gopal PSS. Invasive mold infections among transplant recipients: a single-center observational study. Journal de Mycologie Médicale / Journal of Medical Mycology. 2026;36(2):101629. DOI: 10.1016/j.mycmed.2026.101629
- Hollomon JM, Dahlstrom KM. CRISPR-Cas9-mediated targeted gene deletion in Aspergillus calidoustus, a non-model environmental mold. Microbiology Spectrum. 2026;14(6):e03899-25. PMID: 42112836
- Ing SK, Lee YH, Tan YY, Aziz MBA, Chang AKW. Primary traumatic cutaneous aspergillosis of the hand caused by Aspergillus terreus following a mould-contaminated penetrating injury. Medical Mycology Case Reports. 2026;52:100798. PMID: 42237979
Article information
Prepared for: aspergillosis.org professionals section
Intended audience: healthcare professionals and researchers
Article type: monthly professional literature update
Coverage period: May 2026
Last reviewed: June 2026
Clinical Trials Update: Progress in ABPA and Invasive Aspergillosis Research
Date reviewed: 8 June 2026
Clinical research into aspergillosis continues to move forward, although there have been relatively few major new trial launches in recent weeks. The most significant developments involve two areas:
- Growing evidence supporting biologic treatment for Allergic Bronchopulmonary Aspergillosis (ABPA).
- Progress towards completion of a major international trial of a new antifungal drug for invasive aspergillosis.
Contents
- ABPA: More Evidence for Dupilumab
- Olorofim Trial Moves Towards Completion
- Why These Studies Matter
- What We Didn't Find This Month
- Common Questions
- When to Seek Medical Advice
ABPA: More Evidence for Dupilumab
One of the most encouraging developments in recent years has been the emergence of biologic therapies for ABPA. Researchers continue to publish and present results from the Phase II LIBERTY ABPA AIRED study, which investigated the biologic drug dupilumab.
Dupilumab works by blocking two important inflammatory pathways (Interleukin-4 and Interleukin-13) that contribute to allergic inflammation in asthma and ABPA.
Additional scientific presentations and publications appearing during 2025 and 2026 continue to show consistent benefits for many patients:
- Improved lung function.
- Fewer severe respiratory exacerbations.
- Reduced need for oral corticosteroids.
- Better asthma control.
- Improved quality of life.
- Reductions in total Immunoglobulin E (IgE) and Aspergillus-specific IgE levels.
Although biologics are not suitable for everyone with ABPA, these results continue to strengthen the evidence that targeted immune therapies may offer an alternative to long-term steroid treatment for some patients.
For people living with ABPA, this remains one of the most promising areas of current research.
Olorofim Trial Moves Towards Completion
The other major development concerns olorofim, a novel antifungal medication being developed for difficult-to-treat invasive fungal infections.
The large international Phase III OASIS trial has been comparing olorofim with standard treatment in patients with invasive aspergillosis.
Recent updates suggest that recruitment has now effectively closed and that the study is entering its final follow-up and analysis phase.
This is an important milestone because it usually means researchers have enrolled enough participants and are now collecting the final outcome data needed to determine whether the treatment works and how safe it is.
However, the most important information is still awaited:
- The primary trial results have not yet been published.
- No peer-reviewed Phase III paper is currently available.
- The effectiveness of olorofim compared with current standard treatments remains under formal evaluation.
If the final results are positive, olorofim could become an important additional treatment option for patients with invasive aspergillosis, particularly those whose infections are resistant to existing antifungal drugs or who cannot tolerate current therapies.
Why These Studies Matter
Research into aspergillosis has traditionally lagged behind many other respiratory and infectious diseases. It is therefore encouraging to see progress occurring in two key areas:
- Allergic disease (ABPA) – where biologics are offering the possibility of reducing steroid dependence.
- Invasive disease – where new antifungal drugs may help address drug resistance and treatment failure.
These studies also reflect a broader trend towards more personalised treatment approaches, matching therapies to the specific type of aspergillosis and the underlying immune response of the patient.
What We Didn't Find This Month
While there has been progress in ongoing studies, we did not identify any major new:
- ABPA clinical trials.
- Chronic Pulmonary Aspergillosis (CPA) treatment trials.
- Severe Asthma with Fungal Sensitisation (SAFS) interventional studies.
- Aspergillus bronchitis treatment trials.
- Major environmental intervention studies.
- Newly terminated or withdrawn aspergillosis drug-development programmes.
This is not unusual. Large clinical trials often take several years to complete, and periods of data analysis between recruitment and publication can be lengthy.
Common Questions
Is dupilumab available for ABPA?
Dupilumab is already licensed for several allergic and eosinophilic conditions, including some forms of severe asthma. Its use specifically for ABPA varies between countries and healthcare systems. Decisions about treatment remain highly individual and should be discussed with a specialist team.
What is a Phase III trial?
Phase III studies are large clinical trials designed to determine whether a new treatment works and how safe it is compared with existing treatments. Positive Phase III results are often required before regulatory approval.
Could olorofim be used for CPA?
Research has explored olorofim in a variety of fungal diseases, but the current Phase III programme focuses on invasive aspergillosis. Further evidence would be needed before routine use in Chronic Pulmonary Aspergillosis.
When might the OASIS results be available?
There is currently no confirmed publication date. As recruitment appears to have finished, the next major milestone will be release of the primary efficacy and safety results.
When to Seek Medical Advice
Clinical trial news is exciting, but it should not replace advice from your healthcare team.
Seek medical attention if you experience:
- Worsening breathlessness.
- New or worsening haemoptysis (coughing blood).
- Persistent fever.
- Sudden deterioration in asthma control.
- Significant side effects from antifungal or biologic treatments.
If you are interested in taking part in clinical research, speak with your specialist team about studies that may be available in your area.
Key Takeaway: The strongest current momentum in aspergillosis research remains in biologic treatments for ABPA and new antifungal therapies for invasive aspergillosis. While no major new trials have appeared this month, ongoing studies continue to move closer to delivering results that could influence future care.
Last reviewed: 8 June 2026
Aspergillosis Research Update: Week Ending 8 June 2026
Key Points
- This was a relatively quiet week for aspergillosis research, with few major new clinical studies.
- A review explored whether positive parasite blood tests in people with Allergic Bronchopulmonary Aspergillosis (ABPA) may represent true infection or immune cross-reactivity.
- Chronic Pulmonary Aspergillosis (CPA) continues to gain recognition as an important complication following tuberculosis.
- Researchers are investigating home monitoring technologies and microsampling approaches.
- Antifungal resistance remains an important area of global surveillance.
- A major review examined Aspergillus species beyond Aspergillus fumigatus.
Contents
- Can ABPA Be Confused with Parasitic Infections?
- Can Tuberculosis Lead to CPA?
- Could Home Blood Testing Help Aspergillosis Patients?
- What Is Antifungal Resistance?
- Are There Aspergillus Species Other Than Aspergillus fumigatus?
- New Aspergillus Research
- Other Interesting Publications
- What Does This Mean for Patients?
- When Should Patients Seek Medical Advice?
This week was dominated by review articles rather than major new clinical trials. While there were no obvious practice-changing breakthroughs, several useful papers provide updated summaries of important topics including ABPA diagnosis, Chronic Pulmonary Aspergillosis (CPA), antifungal resistance and future monitoring technologies.
These reviews help clinicians and researchers understand where the field currently stands and identify areas where further research is needed.
Can ABPA Be Confused with Parasitic Infections?
Our research highlight this week is a review by Mewara and colleagues examining the relationship between Allergic Bronchopulmonary Aspergillosis (ABPA) and parasitic worm (helminth) infections. Read the paper on PubMed.
ABPA and some parasitic infections can trigger remarkably similar immune responses, including:
- Very high Immunoglobulin E (IgE) levels
- Raised eosinophils
- Allergic inflammation
- Positive antibody tests
This can occasionally create diagnostic uncertainty. The authors discuss whether positive parasite blood tests in some patients with ABPA represent genuine infection, previous exposure or immune cross-reactivity caused by overlapping allergic responses.
Are parasitic infections common in the UK?
For most patients living in the UK, USA, Canada and much of Europe, parasitic worm infections remain relatively uncommon. However, doctors may consider them in people who have:
- Lived abroad
- Travelled extensively
- Worked overseas
- Been exposed to contaminated soil or freshwater in higher-risk regions
One parasite of particular interest is Strongyloides stercoralis, which can persist silently for many years and may become dangerous if someone receives high-dose steroids or other immunosuppressive treatments.
Take-home message: A positive blood test rarely tells the whole story. Symptoms, scans, blood tests and clinical history all contribute to making the correct diagnosis.
Can Tuberculosis Lead to CPA?
A large scoping review examining lung disease after tuberculosis highlighted the growing recognition of Chronic Pulmonary Aspergillosis (CPA) as an important and potentially treatable complication. Read the review on PubMed.
The review identified evidence that antifungal treatment can improve:
- Symptoms
- Radiological findings
- Markers of inflammation
Tuberculosis remains one of the most important risk factors for CPA worldwide.
Many people continue to experience symptoms after completing tuberculosis treatment, including:
- Breathlessness
- Persistent cough
- Fatigue
- Weight loss
- Haemoptysis (coughing up blood)
Increasingly, researchers recognise that some of these patients may have treatable Aspergillus-related disease rather than simply permanent lung damage.
Not all ongoing symptoms after tuberculosis are simply due to old lung damage. Some patients may have treatable Chronic Pulmonary Aspergillosis.
Could Home Blood Testing Help Aspergillosis Patients?
A review of respiratory biomarkers and patient-centred microsampling explored technologies that may eventually make monitoring chronic respiratory diseases easier and more convenient. Read the review on PubMed.
Areas under investigation include:
- Finger-prick blood testing
- Home sample collection
- Microsampling technologies
- Remote monitoring
- Personalised treatment optimisation
These approaches are particularly attractive for patients with long-term conditions who require regular monitoring.
Although still developing, they align closely with the wider move towards patient-centred care and remote monitoring.
What Is Antifungal Resistance?
A review from Japan examined azole-resistant Aspergillus species and their implications for patient care. Read the review on PubMed.
Azole antifungal drugs remain central to treatment for:
- Chronic Pulmonary Aspergillosis (CPA)
- Aspergillus bronchitis
- Invasive aspergillosis
The review highlights the continuing importance of:
- Fungal culture
- Susceptibility testing
- Therapeutic drug monitoring
- Clinical review when treatment is not working as expected
Resistance remains relatively uncommon in many patient groups but continues to be monitored closely worldwide.
Are There Aspergillus Species Other Than Aspergillus fumigatus?
Most patients are familiar with Aspergillus fumigatus, the species most commonly associated with lung disease.
However, a major review published in Clinical Microbiology Reviews examined the black aspergilli, including the Aspergillus niger complex. Read the review on PubMed.
While less common causes of lung disease, these fungi can also be associated with:
- Ear infections
- Nail infections
- Chronic pulmonary disease
- Rare invasive infections
The review serves as a useful reminder that Aspergillus is a large family of related fungi rather than a single organism.
New Aspergillus Research
One of the few original research studies highlighted this week investigated how Aspergillus fumigatus builds and repairs its cell wall. Read the study on PubMed.
The researchers explored how fungal growth is affected by antifungal drugs that target cell wall synthesis.
Although this laboratory work is unlikely to affect patient care immediately, it improves our understanding of how antifungal drugs work and may help identify future treatment targets.
Other Interesting Publications
- Fosmanogepix: A review of an emerging antifungal drug that may play a future role in treating resistant fungal infections. PubMed.
- ABPA and Eosinophilic Granulomatosis with Polyangiitis (EGPA): A rare case report describing overlapping eosinophilic disease and ABPA. PubMed.
- Hyper-IgE Syndrome and Pulmonary Aspergillosis: A case report highlighting fungal infection in a rare inherited immune disorder. PubMed.
What Does This Mean for Patients?
While this was not a week of major breakthroughs, the research reinforces several important messages:
- Diagnosing ABPA can sometimes be complicated because different conditions can produce similar immune responses.
- CPA remains an important and potentially treatable complication after tuberculosis.
- Future monitoring technologies may allow more care to take place at home.
- Antifungal resistance continues to be monitored closely worldwide.
- Research into Aspergillus biology continues to support the development of future treatments.
When Should Patients Seek Medical Advice?
Patients should contact their healthcare team if they experience:
- Increasing breathlessness
- Coughing up blood
- Persistent fever
- Unexplained weight loss
- New chest pain
- A significant increase in sputum production
- New or worsening treatment side effects
Anyone with a history of living or travelling in regions where parasitic infections are common should mention this to their healthcare team before starting high-dose steroid treatment.
Review Information
Last reviewed: 8 June 2026
Prepared for: Aspergillosis.org Weekly Research Update
Audience: Patients, carers and non-specialist readers
This article summarises recently published research. Research findings may take years to influence routine clinical practice and should not replace personalised medical advice from your healthcare team.
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Help Us Improve Our Damp Homes and Health Questionnaire
We are asking patients, carers and members of the public to help us improve a draft questionnaire for our new UK Citizen Science project on damp homes, mould and health.
Draft 1 of questionnaire download here: Health Effects of Indoor Mould Questionnaire
Key points
- We are developing a questionnaire for a Citizen Science project about damp homes, mould and health.
- Before using it in the study, we want feedback from people who may complete it.
- We are not just asking people to check spelling or grammar.
- We want to know whether the questionnaire asks the right questions, is easy to understand, and collects useful information.
- Your comments can help shape the final version of the study.
Why are we doing this project?
Damp homes and indoor mould are common problems in the UK. Many people worry that dampness, condensation and mould may affect their breathing, allergies, infections, fatigue or general wellbeing.
Our Citizen Science project aims to learn more about the links between homes, indoor mould and health by working directly with patients, carers and householders.
Citizen Science means that members of the public are not just research subjects. They help shape the research, collect information, and improve the questions being asked.
What is the questionnaire for?
The questionnaire is designed to collect information about:
- the type of home someone lives in
- signs of damp, condensation or mould
- heating and ventilation
- previous water damage, leaks or flooding
- respiratory symptoms and other health problems
- whether symptoms seem to change in different environments
- how damp or mould affects everyday life and wellbeing
This information will help researchers understand whether there are patterns between housing conditions and health. It will also help guide the next stages of the project, including possible home sampling and laboratory analysis.
Why do we need feedback?
A questionnaire can look clear to researchers but feel very different to the people completing it.
Patients and householders may notice:
- questions that are confusing
- questions that are too difficult to answer
- important topics that are missing
- sections that feel repetitive
- questions that need a “Don’t know” option
- places where more explanation is needed
This is why your feedback is so important.
What sort of comments are we looking for?
We are especially interested in comments on the following areas.
1. Is the questionnaire easy to understand?
Please tell us if any wording is unclear, too technical, or open to different interpretations.
2. Are any important questions missing?
For example, should we ask more about:
- previous mould exposure in other homes
- roof leaks, plumbing leaks or flooding
- diagnosed respiratory conditions
- asthma, allergic bronchopulmonary aspergillosis, chronic pulmonary aspergillosis or other lung conditions
- steroid treatment or immune-suppressing medicines
- whether symptoms improve away from home
- whether symptoms changed after moving house
3. Is the questionnaire too long?
Long questionnaires can be tiring, especially for people living with chronic illness. We want to collect enough information to make the study useful, but not so much that people give up before finishing.
4. Are any questions difficult to answer accurately?
Some people may not know exact details about their home, heating system, building age or past water damage. We want to identify questions where people may need clearer options, such as “Not sure” or “Don’t know”.
5. Are any questions sensitive?
Questions about housing, health and personal circumstances can sometimes feel sensitive. Please tell us if any question needs a clearer explanation of why it is being asked.
The most important question
One of the most useful questions we can ask is:
If this study could answer one question about damp homes, mould and health, what would you most like to know?
This helps us understand what matters most to patients, carers and householders.
How to send us your comments
Click here for a short Google Form where you can send your feedback.
The feedback form will ask questions such as:
- How easy was the questionnaire to understand?
- Were any questions unclear or confusing?
- Do you think any important questions are missing?
- Were any questions unnecessary or repetitive?
- Was the questionnaire too long, too short, or about right?
- If this study could answer one question about damp homes, mould and health, what would you most like to know?
- Do you have any other comments or suggestions?
You do not need to answer every question. Any feedback is helpful.
This is not a grammar exercise
We are not mainly asking people to proofread the questionnaire.
What we really want to know is:
Does this questionnaire help us collect the information needed to understand whether damp homes and mould may be affecting health, and are we asking the right questions?
Thank you
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The Power of Keeping a Health Diary When You Have Aspergillosis
Last reviewed: June 2026
Audience: People living with aspergillosis, families and carers
Key points
- A health diary can help you understand symptoms, triggers and changes over time.
- It can be especially useful if you experience fatigue, brain fog or memory problems.
- It can make clinic appointments more focused and productive.
- A diary may show progress that is hard to notice day to day.
- The best diary is simple, quick and realistic to keep using.
Contents
- Why keep a health diary?
- How it can help with aspergillosis
- Brain fog and memory
- Spotting patterns and triggers
- Using your diary at appointments
- The psychological benefit
- Simple diary template
- Common questions
- When to seek medical advice
Why keep a health diary?
Living with aspergillosis often means symptoms change from day to day. Some days may be manageable. Others may involve more coughing, breathlessness, fatigue, sinus symptoms, poor sleep or medication side effects.
Because these changes can happen gradually, it can be difficult to remember exactly when symptoms started, whether they are getting better or worse, or what might have triggered them.
A health diary gives you a simple record of what is happening over time. It can help you, your family and your healthcare team see patterns that may not be obvious from memory alone.
How a diary can help with aspergillosis
People with aspergillosis may find it useful to record:
- Cough
- Breathlessness
- Fatigue
- Sputum or phlegm
- Wheeze
- Sinus symptoms
- Sleep quality
- Exercise or walking distance
- Mood and wellbeing
- Medication changes
- Possible side effects
You may also want to note possible triggers, such as damp or mould exposure, pollen, dusty environments, changes in weather, respiratory infections, stress, travel or changes in medication.
Brain fog and memory
Many people with long-term lung conditions describe episodes of brain fog. This may feel like forgetfulness, poor concentration, difficulty finding words, feeling mentally slower than usual, or feeling as though your head is “empty”.
Brain fog can have many possible causes, including fatigue, poor sleep, infection, inflammation, stress, anxiety, pain, medication side effects, low oxygen levels or other health problems.
A diary acts as an external memory. Instead of trying to remember when something changed, you can look back and see what was happening at the time.
Spotting patterns and triggers
| What you record | What it may help show |
|---|---|
| Symptoms | Whether cough, breathlessness or fatigue are improving or worsening |
| Sleep | Whether poor sleep is linked to worse symptoms |
| Exercise | What level of activity is manageable |
| Weather | Whether heat, humidity, cold air or storms affect symptoms |
| Environment | Possible links with damp, mould, dust or pollen |
| Medication | Possible benefits, side effects or changes during dose reduction |
| Infections | Early warning signs or repeated patterns |
Using your diary at appointments
Healthcare professionals may ask questions such as:
- When did your symptoms start?
- Are they getting better or worse?
- Have you noticed any triggers?
- Have you changed any medication recently?
- How far can you walk now compared with before?
- Have you had any infections or courses of antibiotics?
These questions are not always easy to answer from memory, especially when you are tired or anxious. A diary can help you give clearer, more accurate information.
You may find it useful to bring a short summary to your appointment, such as:
- Three things that have improved
- Three things that have worsened
- Any medication changes
- Your main questions for the appointment
Sometimes the diary tells a different story
When you have had a difficult few days, it can feel as though nothing is improving. A diary may show that the wider picture is more encouraging.
For example, you may feel:
“Nothing has changed.”
But your diary may show:
- You are walking further than three months ago
- You are sleeping better
- You have had fewer chest infections
- You are coughing less at night
- You are doing more social activities
Equally, a diary can show gradual deterioration that might otherwise be missed. Both types of information can be useful.
The psychological benefit
Chronic illness can feel unpredictable. A diary can help restore a sense of control by changing the question from:
“Why do I feel awful?”
to:
“What changed recently?”
This can reduce uncertainty and help you feel more involved in your care.
A diary can also become a record of resilience. It may include difficult days, but it can also capture walks completed, holidays taken, family events attended, personal goals reached and challenges overcome.
Keep it simple
Many people stop keeping a diary because they try to record too much. A simple diary is usually more useful than a complicated one.
A daily entry might take less than two minutes and include:
- Symptoms, scored from 0 to 10
- Energy level, scored from 0 to 10
- Sleep quality
- Exercise or activity
- Medication changes
- Anything unusual
Consistency matters more than detail.
Paper, phone or app?
There is no single correct way to keep a diary. You could use:
- A notebook
- A printed diary sheet
- A phone notes app
- A calendar
- Voice notes
- A spreadsheet
- A symptom tracking app
- A fitness tracker or smartwatch
The best diary is the one you will actually use.
Simple diary template
Daily health diary
Date: __________________________
Symptoms, 0–10
Cough: ______
Breathlessness: ______
Fatigue: ______
Sinus symptoms: ______
Overall wellbeing: ______
Sleep
Hours slept: ______
Sleep quality, 0–10: ______
Activity
Exercise or activity today:
__________________________________________________
Medication
Any medication changes or side effects?
__________________________________________________
Notes
Anything unusual today?
__________________________________________________
__________________________________________________
Daily Diary - PDF downloadable
Common questions
Do I need to write every day?
No. Some people write daily. Others only record changes, flare-ups, medication changes or important events.
What if I forget for a few days?
That is very common. Simply restart when you remember. A diary does not have to be perfect to be useful.
Should I record test results?
You can if you find it helpful. Some people record blood results, oxygen saturations, lung function, weight, clinic letters or medication levels. Do not worry if this feels too much. A simple symptom diary is still useful.
Can a diary replace medical advice?
No. A diary is a tool to support conversations with your healthcare team. It should not be used to diagnose or treat symptoms without medical advice.
When to seek medical advice
Seek medical advice promptly if you experience:
- Sudden or significant worsening of breathlessness
- Coughing up large amounts of blood
- Persistent fever
- Severe chest pain
- New confusion or rapidly worsening brain fog
- Weakness, speech problems, facial drooping or visual changes
- Symptoms that are worsening quickly or feel unusual for you
If you are unsure, contact your healthcare team, NHS 111, your GP, or emergency services depending on severity.