When Aspergillus Affects Other Parts of the Body
Invasive aspergillosis usually starts in the lungs. Rarely, particularly when a person is severely immunocompromised or critically unwell, infection can affect other parts of the body.
This is very different from chronic pulmonary aspergillosis (CPA), ABPA, Aspergillus bronchitis or an aspergilloma. Having one of those long-term conditions does not mean that infection will spread through the body.
Key points
- Rare invasive Aspergillus infections can involve organs outside the lungs.
- They mainly occur in people with major immune suppression, severe illness or particular medical risk factors.
- They are diagnosed and treated by specialist hospital teams.
- Antifungal medicines are central to treatment, but scans, biopsies, drainage or surgery may sometimes be needed.
- These rare infections are not the expected outcome for people with chronic forms of aspergillosis.
Who is most at risk?
Infection outside the lungs is most likely to be considered when a person has invasive aspergillosis and is very unwell, or when their immune system is severely weakened.
This can include some people who are:
- Having intensive chemotherapy for blood cancer
- Experiencing prolonged severe neutropenia
- Receiving a stem-cell, bone-marrow or organ transplant
- Taking high-dose steroids or other strong immune-suppressing medicines
- Critically unwell in hospital, including after severe influenza or another serious viral illness
Rare local infections can also occasionally follow an injury, surgery or a medical procedure. The circumstances are very individual, which is why specialist assessment matters.
Which parts of the body can be affected?
When invasive infection spreads beyond the lungs, it can rarely involve other organs. The symptoms depend on the affected area and on the person’s underlying illness.
Brain and central nervous system
Infection involving the brain or central nervous system is rare and serious. Possible symptoms can include severe or unusual headache, confusion, seizures, weakness, changes in speech, balance problems or visual symptoms. These symptoms have many possible causes, but they need urgent medical assessment in someone known to be at high risk.
Heart and blood vessels
Very rarely, Aspergillus can affect the heart valves or blood vessels. This is usually considered in highly specific hospital situations, such as after major surgery or in someone with substantial immune suppression. It requires specialist infectious-disease, cardiology and surgical input.
Kidneys, bones, joints and skin
Kidney, bone, joint and skin involvement is uncommon. It may occur as part of more widespread invasive infection or, in some cases, after direct injury or a procedure. Symptoms vary widely, so doctors use scans, laboratory tests and sometimes a tissue sample to establish the cause.
Eye and ear infections
Aspergillus can also cause local infections of the ear or eye. These are usually separate local conditions rather than evidence that chronic lung aspergillosis is spreading. Eye symptoms such as pain, redness, sensitivity to light or reduced vision need urgent assessment.
How are these infections diagnosed?
No single test provides every answer. Hospital teams may combine:
- Symptoms and medical history
- CT, MRI or other scans
- Blood tests and fungal markers
- Samples from the lungs, blood, skin or another affected site
- A biopsy or surgical sample when this is needed and safe
Finding Aspergillus in a sample does not automatically prove invasive infection. Results are interpreted alongside scans, symptoms and the person’s immune status.
Treatment and specialist procedures
Invasive Aspergillus infections are treated in hospital by specialist teams. Antifungal medicines are usually the main treatment, chosen according to the site of infection, other medicines, kidney and liver function, possible resistance and the person’s overall condition.
Sometimes a procedure is also needed. This may involve:
- Taking a biopsy or other sample to confirm the diagnosis
- Draining an infected collection of fluid
- Removing damaged or infected tissue where it is safe and helpful to do so
- Specialist surgery for a localised infection, such as one affecting the sinuses, heart or another accessible site
These decisions are made individually. Surgery is not automatically required, and it is never a simple decision when someone is already seriously unwell.
A reassuring distinction
It is understandable to feel worried after reading about rare Aspergillus infections online. However, case reports and medical articles often describe people with very different risks from those of someone living with CPA, ABPA, SAFS or Aspergillus bronchitis.
Chronic forms of aspergillosis need proper monitoring and treatment, but they do not usually develop into infection of the brain, kidneys, heart or other organs. If you are worried about a new symptom, discussing it with your own healthcare team is more useful than trying to compare your situation with an internet story.
When should I seek urgent help?
Seek urgent medical help for severe or rapidly worsening symptoms, including major breathing difficulty, confusion, a severe headache with neurological symptoms, significant change in vision, or a rapid deterioration in how you feel.
If you are having cancer treatment, have had a transplant, are taking strong immune-suppressing medicines, or have recently been seriously ill in hospital, contact your treating team promptly about new or worsening symptoms.
Related information
Visit the Invasive & Acute Aspergillosis Hub
Learn about invasive aspergillosis
Aspergillus infections of the ear, eye and nails
References
- Patterson TF, Thompson GR, Denning DW, et al. Practice guidelines for the diagnosis and management of aspergillosis. Clinical Infectious Diseases. 2016;63:e1–e60.
- Brown JS, Armstrong-James D, Ayling-Smith J, et al. British Thoracic Society Clinical Statement on Aspergillus-related chronic lung disease. Thorax. 2025;80(Suppl 1):3–21.
Flu, COVID-19 and Aspergillus: When Is It a Concern?
Severe viral infections can occasionally be complicated by invasive pulmonary aspergillosis. This is mainly a concern for people who are seriously ill in hospital, particularly intensive care.
The strongest evidence concerns severe influenza and severe COVID-19. Other severe viral pneumonias can also leave the lungs vulnerable, but catching an ordinary cold, flu or COVID-19 at home does not usually lead to Aspergillus infection.
Key points
- Severe influenza and COVID-19 can occasionally be complicated by invasive Aspergillus infection.
- This is mainly relevant in hospital and intensive-care settings.
- It is not a usual consequence of routine seasonal flu, COVID-19 or other viral infections managed at home.
- Doctors consider Aspergillus when someone with severe viral pneumonia is not improving as expected or develops new lung changes.
- Chronic aspergillosis does not mean that a person will automatically develop invasive infection when they catch a virus.
Why can severe viral illness increase risk?
A severe respiratory virus can damage the lining of the airways and lungs, disrupt normal immune defences and lead to critical illness. In that setting, Aspergillus may sometimes cause a serious lung infection.
This is different from chronic forms of aspergillosis. It develops rapidly during severe acute illness and requires hospital diagnosis and treatment.
Influenza-associated pulmonary aspergillosis
Influenza-associated pulmonary aspergillosis is most often considered in people admitted to hospital with severe flu, especially if they need intensive-care treatment. Doctors may investigate when fever, breathing problems or scan changes persist or worsen despite treatment.
It is not a reason for most people with flu to assume they have a fungal infection.
COVID-19-associated pulmonary aspergillosis
COVID-19-associated pulmonary aspergillosis can occur in some people with severe COVID-19, particularly those who are critically unwell and need intensive-care support. The illness itself, treatment used in severe disease and other health problems can all affect risk.
Most people with COVID-19, including those recovering at home, do not develop Aspergillus infection.
Other viral infections
Other viruses can sometimes cause severe viral pneumonia. When a person is critically unwell, has major immune suppression or has significant lung damage, hospital teams may consider a range of possible infections, including Aspergillus.
The important point is the severity of illness and the person’s overall risks — not simply the name of the virus.
Who may be at higher risk?
Doctors are particularly alert when severe viral pneumonia occurs alongside factors such as:
- Intensive-care admission or severe respiratory failure
- Major immune suppression
- Intensive chemotherapy, transplant treatment or prolonged neutropenia
- High-dose steroids or other strong immune-suppressing medicines
- Substantial underlying lung disease
How is it diagnosed?
No single test confirms every case. Hospital teams combine symptoms, CT scans, respiratory samples and laboratory tests such as fungal culture, PCR or galactomannan testing.
Finding Aspergillus in a sample does not automatically mean invasive infection. Results need to be interpreted alongside the person’s scans, symptoms and level of immune suppression.
What does this mean for people with chronic aspergillosis?
People with CPA, ABPA, Aspergillus bronchitis, SAFS or an aspergilloma should take viral infections seriously in the same way as other people with long-term lung conditions. However, these chronic conditions do not mean that Aspergillus infection will automatically become invasive after flu or COVID-19.
Vaccination, prompt medical advice when symptoms are severe or worsening, and following your usual respiratory care plan remain the most useful precautions.
Related information
Visit the Invasive & Acute Aspergillosis Hub
Learn about invasive aspergillosis
Visit the Vaccines Hub
References
- Koehler P, et al. Defining and managing COVID-19-associated pulmonary aspergillosis. Lancet Infectious Diseases. 2021;21:e149–e162.
- Feys S, et al. Influenza-associated and COVID-19-associated pulmonary aspergillosis. Lancet Respiratory Medicine. 2024.
Aspergillus Infections of the Ear, Eye and Nails
Aspergillus can occasionally cause local infections of the ear, eye or nails. These are different from lung aspergillosis and usually do not mean that an existing lung condition is spreading through the body.
They can still need the right specialist assessment. The key is to recognise when symptoms need prompt attention, especially if the eye is involved.
Key points
- Ear, eye and nail infections are usually local conditions.
- They are not usually caused by CPA, ABPA or another chronic lung form of aspergillosis spreading through the body.
- Many other conditions can cause similar symptoms, so a correct diagnosis matters.
- Eye symptoms need urgent assessment because infections of the eye can threaten sight.
- Ear and nail infections are often treatable but may need a sample or specialist review.
How common are these conditions?
Ear, eye and nail symptoms are far more often caused by something other than Aspergillus.
- Ear symptoms are commonly due to earwax, eczema, irritation or bacterial outer-ear infection. Fungal ear infection is less common, and Aspergillus is only one possible cause.
- Red, painful or irritated eyes are much more often caused by dryness, allergy, viral or bacterial infection, or another eye condition. Fungal eye infection is uncommon, but it needs urgent assessment because it can be serious.
- Nail changes are commonly caused by injury, skin conditions or other fungi. Even when a nail infection is fungal, Aspergillus is not the usual cause.
So these conditions are worth recognising, but they are not something most people with aspergillosis should expect to develop. A clinician may need to examine the area or take a sample before confirming the cause.
Aspergillus infection of the ear
A fungal infection of the outer ear canal is called otomycosis. Several fungi can cause it, including Aspergillus and Candida. It is a local infection of the ear canal, not a lung infection.
Possible symptoms include:
- Itching or irritation in the ear
- Earache or discomfort
- A blocked feeling or reduced hearing
- Discharge or debris from the ear
- Flaking skin around the ear canal
Otomycosis can be more likely after repeated water exposure, local irritation, ear eczema, use of cotton buds or previous ear treatment. It can also occur in people with diabetes or reduced immune defences.
A GP, pharmacist or ENT clinician may examine the ear. Treatment commonly involves careful removal of debris and local treatment chosen for the likely cause. Avoid putting cotton buds, hairpins or unprescribed drops into the ear canal, as this can worsen irritation or push material deeper inside.
Aspergillus infection of the eye
Fungal infection of the eye is uncommon, but it is important because it can damage sight if treatment is delayed. Infection of the cornea, the clear surface at the front of the eye, is called fungal keratitis.
Aspergillus is one possible cause. Infection may be more likely after an eye injury, particularly one involving soil, plant material or dust, after eye surgery, or in people with certain eye conditions or major immune suppression.
Seek urgent eye-care advice if you have:
- A painful red eye
- New sensitivity to light
- Blurred or reduced vision
- A white or cloudy spot on the surface of the eye
- Eye pain or redness after an injury
Do not try to self-treat a painful or red eye with leftover drops. An optometrist, eye casualty service or ophthalmology team can assess the cause and arrange specialist treatment if needed.
Aspergillus infection of the nails
Aspergillus can occasionally cause a fungal nail infection. However, many nail changes are caused by other fungi, psoriasis, eczema, injury, circulation problems or ordinary ageing.
Nails may become thicker, discoloured, brittle, crumbly or partly detached from the nail bed. These changes do not show which organism is responsible.
A clinician may take a clipping or scraping before recommending treatment. This helps avoid unnecessary medicines and allows treatment to be matched to the likely cause. Nail infections often take time to improve because healthy nail has to grow back.
Does this mean my lung aspergillosis is spreading?
Usually, no. A local ear, eye or nail infection is not normally evidence that CPA, ABPA, Aspergillus bronchitis or an aspergilloma is spreading through the body.
Tell your treating team about any new diagnosis, particularly if you are taking antifungal medicines or immune-suppressing treatment, so they can consider possible interactions and your wider health. But a new local problem is usually assessed through the relevant GP, ENT, eye or dermatology service.
When should I seek advice?
Arrange a routine appointment for persistent ear symptoms, changing nails or recurrent local infections. Seek urgent eye-care advice for eye pain, redness, light sensitivity or any change in vision.
If you are severely immunocompromised, have recently had an organ or stem-cell transplant, or are receiving intensive cancer treatment, contact your specialist team promptly about new or worsening symptoms.
Related information
Visit the Invasive & Acute Aspergillosis Hub
Learn about invasive aspergillosis
Rare Aspergillus infections outside the lungs
References
- Patterson TF, Thompson GR, Denning DW, et al. Practice guidelines for the diagnosis and management of aspergillosis. Clinical Infectious Diseases. 2016;63:e1–e60.
- Bongomin F, et al. A review of onychomycosis due to Aspergillus species. Mycopathologia. 2018;183:485–493.
The Power of Keeping a Health Diary When You Have Aspergillosis
Last reviewed: September 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
For family members and carers: If the person you support would find it helpful, you can help them keep the diary or prepare a short summary before an appointment. Agree together what they want recorded and what they would like you to raise with the healthcare team. The diary should support the person's involvement in their care rather than become something managed for them.
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.
Further information
When illness changes life: finding meaning and support
Chronic illness does not only bring symptoms and treatment. It can change how we see ourselves and our future. A person who has always been independent may need help. Someone whose work or family role gave their days structure may have to step back. Plans can become uncertain. Even when treatment is going well, it can be difficult to recognise the life that has replaced the one you expected.
This is one reason why meaning matters. It is not about finding a positive side to illness, or pretending that loss does not hurt. It is about the things that help us remember who we are, what still matters to us, and what makes a difficult life feel worth living.
People find this in many different places: in relationships, nature, music, humour, work, creativity, caring for others, personal values, faith or spirituality. There is no single answer, and the answer may change as illness changes.
Why meaning can help
When much of life is organised around symptoms, appointments and treatment, it is easy to feel that illness has taken over the whole story. Staying connected to people, activities and beliefs that matter can restore some sense of identity and control.
It may be something very small: a favourite programme, a daily walk when possible, a grandchild’s visit, tending a plant, writing a message to a friend, or being part of a group where you do not have to explain everything. These things do not remove illness, but they can make room for life alongside it.
Faith, spirituality and personal belief
For many people, faith is one important source of support. This may involve prayer, a relationship with God, sacred texts, worship, a faith community, meditation, or a personal sense of connection and purpose. For others, a similar sense of peace or meaning comes through nature, reflection, relationships or deeply held values without being religious.
Research suggests that spiritual wellbeing—particularly a sense of meaning and peace—is associated with better reported quality of life for many people living with chronic illness. This does not mean that faith prevents illness, removes symptoms or is the answer for everyone. It recognises that a person’s beliefs and sources of meaning can matter when they are facing difficult circumstances.
You do not have to feel strong all the time
People living with long-term illness are often described as “strong”. Usually this is meant with warmth and admiration, but it can sometimes feel like another expectation to meet.
Strength does not have to mean feeling positive, brave or grateful all the time. It may mean getting through today. It may mean resting, accepting help, asking a difficult question, or admitting that you are frightened.
For some people with faith, strength comes from feeling that they are not carrying everything alone. For others, it comes from love, friendship, responsibility or a determination to keep going. None is better than another.
Faith can be difficult too
Faith and spirituality are not always straightforward sources of comfort. Illness can bring doubt, anger, guilt and questions that have no easy answer. A person may feel supported by a faith community, or may feel misunderstood by it. These experiences are valid too.
No one should be made to feel that illness is a punishment, a test they have failed, or something they must accept without sadness or anger. Good support makes room for the whole experience—not just hope, but fear, loss and uncertainty as well.
What matters to you?
There is no need to solve the biggest questions all at once. It can be enough to ask:
- What helps me feel most like myself?
- Who helps me feel heard or understood?
- What gives me a little peace, enjoyment or perspective?
- Are there beliefs, values or practices that I want to keep close?
- What small part of today can still belong to me?
Your answers may be practical, emotional, spiritual, social—or a mixture of all of these. They may change with time. That is completely normal.
Support should fit the person
Some people do not want to discuss faith or spirituality at all. Others consider it central to how they understand illness and life. Both positions deserve respect.
If faith or spirituality is important to you, you can mention this to your healthcare team. Many hospitals have chaplaincy or spiritual-care services. These services support people of all faiths and none, and should be led by what matters to you rather than by an attempt to impose beliefs.
Living with chronic illness is not a test of positivity, courage or faith. It is an ongoing process of adapting, finding support and staying connected, where possible, to the people and things that give life meaning.
Further reading
- Spiritual wellbeing and quality of life: a systematic review
- NHS England: chaplaincy and spiritual care
Making room for life alongside aspergillosis
Aspergillosis can change the shape of a life. There may be things you once did easily that now need planning, take more energy, or are no longer possible in the same way.
There may be medication to organise, appointments to attend, symptoms to watch and uncertainty to live with. There may also be things you miss deeply: travelling, work, hobbies, meals out, long walks, independence, or being as active with family as you would like.
It is reasonable to feel sad, frustrated, angry or frightened about those losses. Living with a long-term illness is not simply a practical challenge; it can mean adjusting to a life you did not choose.
Grief and adjustment are rarely a straight line
A diagnosis of aspergillosis can involve grief: grief for the health, freedom, confidence, routines or future you expected to have. Those losses are real, even when other people cannot easily see them.
There is no single route through that grief. You may feel shock, disbelief, anger, fear, sadness, envy, determination, relief at finally having an explanation—or several of these feelings at once. They do not come in a fixed order, and they do not disappear permanently once you have felt them.
A flare-up, a difficult appointment, a new limitation or seeing someone else do something you miss can bring old feelings back. This does not mean you are going backwards. It is part of adjusting to a condition that may be unpredictable and that changes what life looks like.
When you are not ready
Advice about acceptance, gratitude or focusing on what is still possible can be helpful—but not always, and not straight away.
When you feel frightened, exhausted or out of control, these words can sound glib. They may even feel like another demand: something you are expected to do well while you are already trying to cope with symptoms, treatment and uncertainty.
You do not have to feel positive about aspergillosis. You do not have to be “ready” to accept it on anyone else’s timetable. It is enough to acknowledge that this is hard, and that you may need time, support and space to work out what living with it means for you.
People who seem to have found a way forward have usually not done so because they never feel despair, anger or envy. They have often had those feelings too. What helps one person may not help another, and what helps today may not help tomorrow.
This is not a set of rules for how you should live. It is an invitation to notice what might make life a little more bearable, when—and if—you are ready.
Acceptance is not approval
People sometimes talk about “accepting” illness. This can sound like a large and impossible demand, particularly when a diagnosis is new or symptoms are difficult.
Acceptance does not mean that you like having aspergillosis, that you stop hoping for improvement, or that you must be cheerful about the things it has taken from you. It may simply mean recognising the reality of today, so that you can spend less energy fighting the fact of it and more energy living as well as you can within it.
For many people, this happens gradually. There are likely to be days when it feels easier and days when it does not. That is normal.
Small pleasures still count
When life is dominated by appointments, medication and symptoms, it can help to protect one small thing each day that is not about illness.
It might be sitting with a cup of tea, looking through a box of fabric and imagining a future project, reading, music, a favourite television programme, time in the garden, a phone call, watching birds from the window, or simply being outside for a few minutes.
On better days, it may be a gentle walk, a visit, a hobby or time with children and grandchildren. The walk may be shorter, the outing may need more preparation, and the energy may run out sooner—but the pleasure can still be real.
Both things can be true
You can be thankful for supportive family, good care or a peaceful moment and feel devastated by what illness has changed. One feeling does not cancel the other.
You can miss something deeply while finding a different way to take part. Perhaps you cannot take a grandchild to the park today, but you can play a game, share a funny conversation or be an important, loved presence in their life.
The word but can sometimes help:
- “I cannot do that today, but I can do this.”
- “This is not the life I expected, but there are still good things in it.”
- “I need to rest now, but that does not mean the whole day is lost.”
Try not to measure your life against someone else’s
It can be painful to watch others do things that are currently out of reach: travelling, eating out, walking long distances or making plans without considering symptoms first.
One short phrase that some people find useful is: “Let them.” Let other people enjoy what they can do, without making it a judgement on what you cannot do at this point in your life.
Your energy is valuable. It may be kinder to use it for the people, places and activities that give something back to you.
Be gentle on the hard days
There will be sad days and anxious days. A long-term illness can be tiring physically and emotionally, and there is no need to apologise for finding it hard.
On those days, aim smaller. Rest. Accept help. Do the next manageable thing. Speak to someone you trust. If low mood, anxiety or feeling overwhelmed is becoming difficult to manage, tell your GP or clinical team; emotional support is part of living well with a long-term condition.
You are still you
Aspergillosis may require a great deal of attention, but it does not define everything about you. You remain a parent, grandparent, partner, friend, maker, reader, gardener, traveller-in-waiting, music-lover—or whatever matters most to you.
There is no timetable for coming to terms with a long-term illness. You can only move forward at your own speed, and that speed is shaped by many things: your symptoms, treatment, relationships, work, finances, past experiences and private worries that other people may not see.
Be kind to yourself. Give yourself time—not just today, but as long as you need. Better times can still lie ahead, perhaps when you are able to loosen your grip on the life you expected and make space for the life that is possible now.
This article was inspired by a thoughtful discussion in the Aspergillosis Support community. Thank you to everyone who shares their experience so generously.
Our Thursday Sessions offer a supportive space to discuss the practical and emotional realities of living with aspergillosis.
The Thursday Sessions: When Managing Treatment Becomes as Exhausting as Managing Illness
At this week’s Thursday Session, we discussed a difficult but very recognisable part of life with a long-term condition: the point at which managing treatment, appointments, symptoms and safety starts to feel as exhausting as the illness itself.
A short note about the recording: unfortunately, it did not save, so this is a reconstructed summary rather than a verbatim account. Some details will inevitably be missing. We have reviewed the recording setup again so future discussions are less likely to be lost.
The hidden work of staying safe
Treatment burden is not only about the number of tablets, inhalers, appointments or side effects. It can mean having to stay alert enough to explain your condition and advocate for the right care when you are at your most unwell.
People spoke about arriving in unfamiliar settings—such as A&E, a ward or critical care—where staff may not immediately recognise complex needs. Someone with an adrenal-crisis risk, important steroid-replacement requirements or a serious medicine reaction may feel they have to remain lucid, remember vital information and make sure it is acted on, even when they are severely ill, sleepy or exhausted.
Laminated summaries, emergency cards and medicine lists can help, but only if they are noticed and used. No one should feel that their safety depends on being well enough to make sure a document is read.
Sitting between clinicians
Another exhausting experience is being caught between different parts of the healthcare system. A GP, hospital clinician and specialist may each see only part of the picture, and advice can sometimes feel inconsistent.
Patients can then find themselves repeating the same history, trying to reconcile different instructions, deciding whose advice to follow, and acting as the coordinator of their own care. That work is demanding in itself—and particularly hard when fatigue and illness are already limiting concentration.
Carers carry part of the burden too
For many people, a partner, family member or carer becomes an essential advocate. They may have to explain the history again when a new clinician arrives, remember medication details, notice when something is being missed, and speak up when the patient cannot.
That support can be lifesaving and deeply valued, but it is also exhausting and emotionally demanding. The burden of navigating care should not fall so heavily on families.
Fatigue has to be managed in small units
A major thread was fatigue. Sometimes it has to be managed from meal to meal, rather than day to day.
People described saving energy early in the day, not using a brief good spell too enthusiastically, and constantly weighing up the cost of an activity tomorrow—or even for several days afterwards. A good day is welcome, but it can bring the difficult decision of whether to enjoy the energy now or save it for essentials later.
One memorable analogy was to watch what a cat does: eat, sleep, have a little gentle activity or go outside, then rest again. It is not about giving up on life; it is about recognising a natural rhythm of activity and recovery.
Food and forward planning
Eating can become another demanding task. On a bad day someone may be too tired to cook, have little appetite, feel nauseated or have an upset stomach, or simply find food unappealing.
Preparing and freezing simple meals when energy is better, keeping easy foods available, and sharing the planning with a carer where possible can help. But this revealed an important paradox: all the things that make illness easier to manage—planning meals, arranging medicines, preparing for appointments, writing emergency notes and pacing activity—also require energy, attention and organisation.
When someone is already exhausted, even good self-management advice can feel like another job.
What can make the burden lighter?
There is no single solution, and what is possible will vary from person to person. But several practical approaches may reduce the amount that has to be held in one exhausted mind.
- Make the plan simpler where possible. At appointments, it can help to ask: Which parts of this plan are essential right now? Is there anything we can simplify, combine or postpone safely?
- Share the remembering. A short, current medicine list, key diagnoses, emergency needs and contact details can help a family member, carer or unfamiliar clinician understand the essentials quickly.
- Plan for low-energy days. Simple food, repeat prescriptions, transport, essential phone numbers and rest can be prepared when energy is better—not as a test of organisation, but as a way of protecting the person you will be on a bad day.
- Pace before the crash. Resting between tasks, between meals, and before exhaustion becomes overwhelming may be more sustainable than trying to recover afterwards.
- Tell someone when it is becoming too much. A clinician, pharmacist, family member or carer may be able to help identify priorities, organise support or review whether treatment side effects are adding to the problem.
- Use support spaces. Talking with people who understand the constant calculations of long-term illness can reduce isolation and produce ideas that are realistic rather than idealised.
The aim is not perfect self-management. It is to make life a little safer, less demanding and more liveable.
Stability helps, but pacing still matters
People also reflected that getting through unstable periods, taking medicines as agreed and finding treatment that improves control can reduce fatigue over time. Biologics can make a real difference for some people.
But even in a more stable phase, the same principles may apply: ration energy, do things slowly and gently, save some for later, and rest properly and often—sometimes even between meals.
When it all feels too much
Perhaps the deepest point was that people can become so tired of managing everything that they feel like giving it up for a while. That does not mean they do not care about their health. It is often a sign that the work of managing illness has become relentless.
If someone feels close to stopping an important treatment, or simply cannot keep up with the plan, it is important to tell a clinical team, GP, pharmacist or trusted person early. Sometimes the answer may be to simplify what is expected, identify immediate priorities, organise more support, or review whether treatment side effects are adding to the problem.
Even recognising that help is needed does not guarantee it is accessible. People spoke about the effort of trying to reach a clinician at home, navigating call systems, waiting for a reply, or trying to get the right person’s attention in hospital. When symptoms, fatigue or anxiety are already high, barriers to accessing care can be the final strain that makes self-management feel impossible.
One participant also mentioned the Asthma + Lung UK helpline as a useful source of support when it had been difficult to get hold of their usual GP or clinical team. Speaking to someone who understands lung conditions can help people think through what is happening, what questions to ask and where to seek the right help next.
The helpline is not an emergency or out-of-hours service, but it offers practical, emotional and health-related support on weekdays. For urgent help outside usual services, NHS 111 can advise on the right local route; for a life-threatening emergency, call 999.
Asthma + Lung UK helpline and support →
Managing is the way ahead
One participant reflected that sometimes talking things through brings insight and understanding at another level. Their conclusion was simple but powerful: managing is the way ahead.
That is a positive reframing. Managing does not mean giving in to illness. It means changing the frame: finding ways to pace, plan, rest, ask for help and live alongside an illness without allowing its demands to take over everything.
The Thursday Session showed that treatment burden is not simply “too many medicines”. It is the cumulative work of staying safe, organising care, explaining yourself, managing energy, feeding yourself, planning ahead and trying to access help—often while feeling least able to do any of it.
But sharing that work, speaking honestly about it and finding manageable ways forward can make the burden feel less lonely.
Join the next Thursday Session
The Thursday Sessions are friendly online discussions for people living with aspergillosis, family members and carers. You are welcome to share, ask a question or simply listen.
Find the meeting details and join the next session →
More Thursday Sessions: explore discussion summaries and find out how to join.
⭐ Allergic Bronchopulmonary Aspergillosis (ABPA): Why Diagnosis Is Missed and Who Needs to Be More Aware
For patients, families and non-specialist healthcare professionals
Allergic bronchopulmonary aspergillosis (ABPA) is an immune reaction to Aspergillus that usually affects people with asthma or cystic fibrosis. It can cause worsening wheeze, cough, thick mucus, repeated flare-ups and, over time, bronchiectasis.
ABPA is treatable, but is often mistaken for difficult asthma, recurrent chest infections or a routine asthma flare. Earlier recognition matters because repeated inflammation and mucus plugging can cause avoidable airway damage.
Why ABPA is missed
It can look like difficult asthma
Wheeze, cough, breathlessness and sputum are common in asthma. When symptoms continue despite appropriate inhaler treatment, repeated courses of oral steroids, or biologic treatment, it is easy to keep escalating asthma treatment without considering a fungal allergy.
Flare-ups may be labelled as “chest infections”
ABPA can cause new or worsening cough, mucus, chest tightness and changes on an X-ray or CT scan. These episodes may be treated as bacterial or viral infections. Infection can certainly coexist, but recurring episodes should prompt a review of whether ABPA has been considered.
Blood results need context
Total IgE, Aspergillus-specific IgE, Aspergillus-specific IgG and eosinophils can all help, but none is sufficient alone. Oral steroids and some biologic medicines can alter eosinophil counts; different laboratories also use different methods and reference ranges.
Imaging clues can be overlooked
Mucus plugging, fleeting lung shadows, bronchiectasis and—in some people—high-attenuation mucus are important clues. Comparing scans over time and asking the radiology team to consider ABPA can be helpful when the clinical picture fits.
Responsibility crosses several specialties
ABPA may first be encountered in general practice, severe-asthma services, respiratory medicine, emergency care, radiology or cystic fibrosis services. That makes a simple shared question valuable: could fungal sensitisation or ABPA explain this pattern?
Who is most likely to need assessment?
- People with asthma that remains poorly controlled despite appropriate treatment.
- People needing repeated rescue courses of oral steroids.
- People with recurrent episodes of thick mucus, mucus plugging or unexplained changes on chest imaging.
- People with asthma and bronchiectasis, especially when flare-ups are frequent.
- People with cystic fibrosis and compatible symptoms or imaging changes.
- People with known sensitisation to Aspergillus whose respiratory symptoms are worsening.
How ABPA is assessed
Current international guidance uses a combination of clinical, laboratory and imaging findings. In someone with asthma, cystic fibrosis or a compatible clinical-radiological presentation, clinicians usually look for:
- Sensitisation to Aspergillus, most commonly a positive A. fumigatus-specific IgE test.
- Total IgE of 500 IU/mL (kU/L) or above, recognising that treatment and clinical circumstances can affect results.
- At least two supporting features: Aspergillus-specific IgG, a current or previous raised eosinophil count, or imaging changes that fit ABPA.
This is a clinician-led diagnostic framework, not a checklist for self-diagnosis. The tests and thresholds need to be interpreted with symptoms, medicines, scan findings and the laboratory method in mind.
Red flags worth discussing with a clinician
- Asthma with repeated unexplained exacerbations or poor response to usual treatment.
- Thick plugs of mucus, especially recurrent or dramatic episodes.
- A high or rising total IgE, particularly alongside evidence of Aspergillus sensitisation.
- Bronchiectasis, new infiltrates, mucus plugging or other suggestive CT findings.
- A current or previous raised eosinophil count, while recognising this may be suppressed by treatment.
- Aspergillus detected in sputum in a person with compatible asthma symptoms or imaging.
What can happen if diagnosis is delayed?
Untreated or repeatedly active ABPA can contribute to ongoing inflammation, recurrent flare-ups, mucus plugging and bronchiectasis. These can affect day-to-day quality of life and may make respiratory problems harder to manage. Timely recognition does not guarantee that all damage can be reversed, but it gives the best opportunity to control inflammation and reduce further harm.
What should patients do?
If this description sounds familiar, do not change treatment yourself. Ask your GP, respiratory clinician or asthma team whether ABPA has been considered, and whether blood tests, sputum testing or chest imaging should be reviewed. Keep a record of flare-ups, steroid courses, mucus symptoms and previous scans if you can.
Seek urgent medical help for severe breathlessness, significant coughing of blood, severe chest pain, confusion, blue lips or face, or rapidly worsening illness.
When is specialist advice helpful?
Specialist advice can be useful when the diagnosis remains uncertain, treatment has not worked as expected, there are important drug interactions or side effects, or there is complex coexisting bronchiectasis or chronic lung disease. The National Aspergillosis Centre provides specialist support and remote advice for complex cases through the usual clinical referral routes.
Further reading
- Understanding Aspergillus blood tests: IgE and IgG
- Allergic bronchopulmonary aspergillosis (ABPA)
- Diagnosing Aspergillus infections in the lungs
- Find an aspergillosis clinic
- Revised ISHAM guidance on diagnosing and managing ABPA
Last reviewed: August 2026.
Verified UK Resources for Damp, Mould & Health
For people in the UK worried about damp, mould and health
Damp and mould can worsen asthma and other respiratory conditions. For people living with aspergillosis, bronchiectasis, severe asthma or other long-term lung disease, it is reasonable to take a persistent problem seriously and ask for the underlying cause to be put right.
This guide brings together reliable UK health, housing and practical-support sources. It does not promote commercial mould testing, urine mycotoxin tests or “detox” treatments.
Health information you can trust
UKHSA and government guidance on damp and mould
The government’s consolidated guidance explains the health risks of damp and mould and the actions expected of rented-housing providers. It is the best starting point for understanding why the issue matters and why it should not simply be blamed on a tenant’s lifestyle.
UKHSA / GOV.UK: Understanding and addressing the health risks of damp and mould
NICE: indoor air quality at home
NICE guidance covers indoor air quality in homes, including damp and mould. It is helpful for understanding practical measures such as ventilation and moisture control, while recognising that tenants cannot fix structural defects or inadequate building design on their own.
NICE: Indoor air quality at home (NG149)
Asthma + Lung UK
This gives accessible advice for people with asthma and other lung conditions, including practical steps and housing-rights information for renters.
Asthma + Lung UK: Damp and mould in a rented home
Support for renters in England
Housing law differs across the UK. The following links are mainly for England; if you live in Scotland, Wales or Northern Ireland, use your local council or national housing-advice service for the equivalent rules.
Private renters
Shelter explains how to report damp and mould, what a private landlord may need to repair, and when to ask the council’s environmental-health team for help.
Shelter: Damp and mould in private rented homes
Council and housing-association tenants
Shelter provides practical guidance and letter templates for reporting damp and mould to a council or housing association.
Shelter: How to deal with damp and mould in social housing
Citizens Advice
Citizens Advice offers straightforward help on responsibility for repairs and how to take the next step when a landlord does not respond.
Citizens Advice: Damp in rented homes
Awaab’s Law: what it means for social-housing tenants in England
Awaab’s Law came into force on 27 October 2025. It introduces fixed timeframes for social landlords in England to investigate and address reported damp and mould hazards, particularly where there is a significant risk of harm.
For serious damp or mould that is not an emergency, current guidance describes a 10-working-day investigation period, followed by requirements to make a home safe and communicate the next steps. Emergency hazards must be dealt with much faster. The exact duties depend on the facts of the case, so use the current official guidance rather than relying on a general summary.
If your landlord does not act
- Keep copies of emails, letters, photographs and notes of phone calls.
- Ask your council’s environmental-health or private-rented-housing team for an inspection if the problem is serious or persistent.
- If you rent from a council or housing association, use its formal complaints process. The Housing Ombudsman explains how complaints are handled.
- Do not stop paying rent or move out without taking housing advice first; this can have serious consequences.
Practical steps at home
Small measures may reduce condensation while you wait for repairs, but they are not a substitute for a landlord fixing a leak, poor ventilation, failed heating or other building defect.
- Use fitted extractor fans where available and report them if they do not work.
- Ventilate briefly and safely when weather and security allow.
- Keep furniture slightly away from cold external walls where possible.
- Follow manufacturer safety advice for any dehumidifier or heater; never use unsafe heating methods to dry a room.
What about “toxic mould”, mycotoxins and commercial tests?
There is good evidence that damp and mouldy homes can worsen respiratory symptoms and health. That does not mean that every symptom is caused by “toxic mould”, or that expensive environmental tests, urine mycotoxin tests or detox programmes can diagnose or treat illness from a home.
The useful intervention is to identify and fix the moisture problem, remove visible mould safely where appropriate, and seek proper medical advice for symptoms. For a broader evidence review, see World Health Organization: Dampness and mould.
When to seek medical advice
Speak to your GP or usual respiratory team if damp or mould appears to be worsening asthma, cough, wheeze or breathlessness. Seek urgent help for severe breathlessness, chest pain, significant coughing of blood, blue lips or face, confusion, or rapidly worsening illness.
Last reviewed: August 2026.
🧪 Understanding Aspergillosis Blood Tests: IgE and IgG Explained
For patients in the UK and internationally
Blood tests for Aspergillus are often an important part of investigating and monitoring aspergillosis. They can be confusing because a result may be raised for several reasons, different laboratories use different methods, and no single blood test can diagnose every form of aspergillosis on its own.
This guide explains the three results people most commonly ask about: total IgE, Aspergillus-specific IgE and Aspergillus-specific IgG.
What do the different tests measure?
| Test | What it measures | How it may help |
|---|---|---|
| Total IgE | The overall level of an allergy-related antibody in the blood. | Often raised in allergic conditions, including ABPA, but also in asthma, eczema and other conditions. It is not specific to Aspergillus. |
| Aspergillus-specific IgE | Evidence that the immune system is sensitised to Aspergillus, usually A. fumigatus. | Important when investigating allergic bronchopulmonary aspergillosis (ABPA) or fungal sensitisation in asthma. |
| Aspergillus-specific IgG | A different immune response, often associated with longer-term exposure or infection. | Can support investigation of chronic pulmonary aspergillosis (CPA) and can contribute to assessment of ABPA. The laboratory method and clinical context matter greatly. |
Why the number alone is not the answer
Laboratories use different testing platforms, units and locally validated reference ranges. This means that a result cannot safely be interpreted by comparing it with a number found online or with somebody else's result. Always keep the result together with the laboratory reference range and the name of the test.
In particular, IgG results from different assays are not interchangeable. A result may be reported in mgA/L, AU/mL or another unit, with a different threshold for that assay.
How blood tests fit into ABPA assessment
ABPA is an allergic lung condition that usually occurs in people with asthma or cystic fibrosis, and sometimes in people with a compatible clinical and radiological picture. Current international guidance uses a combination of findings rather than one result.
In broad terms, clinicians look for:
- evidence of sensitisation to Aspergillus (usually a positive A. fumigatus-specific IgE);
- a total IgE of 500 IU/mL (kU/L) or above, although treatment such as oral steroids can affect the result;
- and supporting evidence, such as Aspergillus-specific IgG, a current or previous raised eosinophil count, or characteristic changes on chest imaging.
This is a diagnostic framework, not a home diagnostic test. Some people with asthma have fungal sensitisation without ABPA, and some people with suspected ABPA need repeat testing or specialist interpretation.
What about CPA?
For chronic pulmonary aspergillosis, an Aspergillus-specific IgG result can be an important clue, but it is considered alongside symptoms lasting over time, lung imaging and evidence of Aspergillus infection. A normal or only slightly raised result does not settle the question on its own, particularly if there is a strong clinical reason to investigate further.
What tests might be needed as well?
| Test or information | Why it may matter |
|---|---|
| Symptoms and medical history | Asthma control, cough, mucus, breathlessness, weight loss, previous lung disease and treatment history all change how results are understood. |
| Chest imaging | A chest X-ray or CT may show bronchiectasis, mucus plugging, cavities, nodules or other changes that help distinguish different conditions. |
| Sputum culture or PCR | May detect Aspergillus in the airways. A result still needs clinical interpretation: detecting the fungus is not always the same as proving disease. |
| Eosinophil count and lung function | Can help assess allergic airway inflammation and asthma, but can be altered by steroids and some biologic medicines. |
Can treatment affect the results?
Yes. Oral steroids can reduce some signs of allergic inflammation, including eosinophils, and biologic medicines can make eosinophil counts look lower than they were before treatment. This is one reason why your clinician may look at older blood results, repeat a test, or interpret a result differently in the light of your medicines.
For people with ABPA, total IgE is sometimes measured over time as one part of monitoring response or a possible flare. The pattern matters more than a single isolated number, and results should usually be compared using the same laboratory method where possible.
Questions you can ask at an appointment
- Which Aspergillus blood tests have I had, and what are the laboratory reference ranges?
- Does this result suggest sensitisation, infection, both, or neither?
- Do my symptoms and scan findings fit with the blood test result?
- Could my current steroid or biologic treatment affect the result?
- Would repeating the test, checking sputum, or seeking specialist advice help?
When to seek advice promptly
Seek clinical advice promptly if you have worsening breathlessness, chest pain, coughing up blood, a significant fever, rapidly worsening asthma symptoms or feel severely unwell. Blood-test results should not delay assessment of worrying symptoms.
Further reading
- Revised ISHAM guidance on diagnosing and managing ABPA
- Allergic bronchopulmonary aspergillosis (ABPA)
- Chronic pulmonary aspergillosis (CPA)
- Diagnosing Aspergillus infections in the lungs
Last reviewed: August 2026.