Sinusitis in Patients with ABPA
When to suspect it, when to investigate, and when to refer
Why this matters
Patients with allergic bronchopulmonary aspergillosis (ABPA) are usually managed as having a lung disease. Diagnosis, monitoring, and treatment focus appropriately on the chest, immunology, and asthma control.
However, ABPA occurs within a single continuous airway, extending from the nose and sinuses to the lungs. Disease in the upper airway can coexist with, exacerbate, or complicate lower airway inflammation — yet sinus disease is not routinely assessed in ABPA care pathways.
This article outlines:
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What is known about sinus disease in this context
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Which symptoms should raise suspicion
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When investigation or ENT referral should be considered
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What GPs and non-specialists can reasonably do
The united airway: a brief reminder
The upper and lower airways share:
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Type 2 (eosinophilic) inflammation
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Immunoglobulin E–mediated immune responses
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Common triggers, including allergens and fungi
Chronic rhinosinusitis is common in asthma and severe asthma, and treatment of sinus disease can improve lower airway outcomes in some patients.
ABPA sits within this same inflammatory spectrum, even though its management is lung-centred.
Sinus disease in ABPA: what is (and isn’t) known
What we know
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Chronic rhinosinusitis is common in patients with asthma and severe asthma
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Sinus disease may be symptomatic or relatively silent
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ABPA guidelines do not mandate routine ENT review or sinus imaging
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ENT involvement, therefore, varies widely between centres
What we do not know
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Whether routine ENT assessment improves ABPA outcomes
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Which ABPA patients benefit most from sinus intervention
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The optimal timing for ENT referral in ABPA
As a result, clinical judgement remains central.
Symptoms that should prompt consideration of sinus disease
Sinusitis in ABPA patients does not always present with classic “blocked nose and facial pain”.
Key symptoms include:
Common but often overlooked
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Persistent post-nasal drip
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Foul, bitter, metallic, or “infected” taste in the mouth
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Throat clearing, chronic cough
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Thick or sticky mucus sensation
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Symptoms are worse on waking or lying flat
More typical sinonasal features
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Nasal blockage or congestion
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Facial pressure or fullness
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Reduced or altered sense of smell
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Nasal crusting or discharge
Contextual clues
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Poor durability of response to steroids or antifungals
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Recurrent “flares” without clear chest triggers
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Coexisting severe asthma or nasal polyps
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Symptoms are worse in damp or mould-affected housing
A persistent foul taste in the mouth is a recognised symptom of chronic sinus disease, usually due to post-nasal drainage of inflamed secretions.
Damp homes and sinus disease
Living in damp or mould-affected environments is associated with:
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Higher rates of chronic rhinosinusitis
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Upper airway irritation and inflammation
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Allergic sensitisation to fungal spores
In most cases, this results in inflammatory or allergic sinusitis, not invasive fungal infection.
Fungal involvement may act as an immune trigger, even when not labelled as “fungal sinusitis”.
Fungal sinusitis: rare vs under-recognised
It is important to distinguish between entities:
| Type | Frequency | Key point |
|---|---|---|
| Invasive fungal sinusitis | Rare | Usually immunocompromised; dramatic presentation |
| Fungal ball (mycetoma) | Uncommon | Usually obvious on CT |
| Allergic fungal rhinosinusitis | Likely under-recognised | Requires active suspicion |
Allergic fungal rhinosinusitis overlaps biologically with ABPA:
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IgE-mediated
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Eosinophilic inflammation
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Thick allergic mucin
It is not routinely sought, so it may be under-diagnosed in at-risk groups.
What GPs and non-specialists can reasonably do
1. Take upper airway symptoms seriously
Especially in ABPA or severe asthma patients with:
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Persistent post-nasal symptoms
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Foul taste
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Recurrent unexplained deterioration
2. Examine the nose and throat
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Look for polyps, discharge, and crusting
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Note mouth breathing or altered voice quality
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Check dentition (to exclude dental causes)
3. Consider imaging when symptoms persist
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CT sinuses (not plain X-ray) is the imaging of choice
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Particularly appropriate if symptoms last >8–12 weeks or recur
4. Refer to ENT when:
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Symptoms are persistent or progressive
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CT shows significant sinus disease
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There is a poor response to standard medical therapy
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There is diagnostic uncertainty
Referral does not imply surgery — ENT input may be diagnostic or medical.
What this article is not saying
-
It does not suggest that all ABPA patients need an ENT referral
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It does not claim that sinus treatment improves ABPA outcomes
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It does not override existing guidelines
It does suggest that earlier consideration of the upper airway is reasonable in selected patients.
Key take-home points for clinicians
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The airway functions as a single inflammatory system
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Sinus disease may be subtle, under-reported, or atypical
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A foul taste in the mouth is a meaningful symptom
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Damp or mould exposure increases sinus disease risk
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ENT referral is appropriate when symptoms persist or recur
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Evidence gaps remain — but clinical vigilance is justified
In summary
ABPA is managed as a lung disease, but patients live with a whole airway.
Recognising when sinus disease may be contributing can help explain persistent symptoms and guide appropriate referral — without over-investigation or over-treatment.
ABPA and Work: What a Patient Poll Tells Us About Employment, Health, and Real-World Impact
An article for patients, GPs, and non-specialist healthcare professionals
Allergic bronchopulmonary aspergillosis (ABPA) is often discussed in terms of lung function, immunology, and imaging. Far less often do we talk about its impact on everyday life, particularly on a person’s ability to work.
A poll run within the National Aspergillosis Centre patient community asked a simple but powerful question:
Who is still able to work while living with ABPA – and who has had to stop or retire?
The responses provide an important insight into the functional and socioeconomic burden of ABPA.
Key findings from the poll (patient-reported)
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Working full time: 17%
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Working part time (days or hours): 18% combined
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Not working: 30%
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Retirement age: 21%
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Retired early for health reasons: 12%
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Currently on sick leave / full-time carer / pre-diagnosis: small but notable groups
Even allowing for the informal nature of a social media poll, the overall pattern is clear.
What this tells us
1. Sustained full-time work is uncommon in ABPA
Fewer than one in five respondents were able to work full time. Even among those still working, many described reduced hours, flexible arrangements, or fragile employment dependent on day-to-day health.
ABPA is often incompatible with predictable, high-demand working patterns.
2. ABPA frequently leads to work loss or early retirement
A substantial proportion of respondents were either:
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No longer working at all, or
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Retired earlier than planned specifically because of health
This is particularly striking given that ABPA often affects people during their working years and may coexist with asthma, bronchiectasis, or long-term steroid use.
3. “Retirement age” can hide health-forced exit
Some respondents selected “retirement age,” but accompanying comments revealed that many:
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Left work earlier than expected
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Changed careers or reduced responsibilities years before retirement
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Worked through ill health until they no longer could
This matters when interpreting employment statistics: health-driven work loss may be underestimated.
4. Unpaid work and instability are often overlooked
The poll also highlighted:
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People currently on prolonged sick leave
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Full-time unpaid carers
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Individuals still awaiting diagnosis but already struggling to work
These groups are frequently invisible in employment data, yet represent significant personal and societal impact.
Why ABPA affects the ability to work
For patients and non-specialists, it is important to understand that work difficulties in ABPA are not simply due to “asthma symptoms.”
Common contributors include:
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Chronic breathlessness and cough
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Severe fatigue and post-exertional exhaustion
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Recurrent chest infections
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Steroid side-effects (muscle weakness, bone disease, mood changes, diabetes risk)
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Unpredictable flare-ups requiring rest, antibiotics, or hospital care
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Cognitive and emotional burden of long-term illness
Together, these make consistent attendance, physical work, and high cognitive load difficult to sustain.
Implications for patients
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Difficulty working is not a personal failure
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Many others with ABPA face similar challenges
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Adjustments, reduced hours, or stopping work altogether may be medically appropriate
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Asking for support is reasonable and justified
Implications for GPs and non-specialist clinicians
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Employment status should be considered a key outcome of disease control
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Fit notes, occupational health input, and benefits documentation are part of holistic care
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ABPA is a fluctuating condition – patients may cope for periods and then deteriorate
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Statements such as “lung function is stable” do not always reflect real-world functioning
Understanding the work impact helps clinicians better support patients in consultations, reports, and advocacy.
Implications for systems and policy
This poll reinforces that ABPA carries a significant socioeconomic burden, including:
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Reduced workforce participation
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Early retirement
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Increased reliance on health and social support systems
Any assessment of disability, employment capability, or long-term planning must take into account:
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Variability over time
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Treatment burden
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Side-effects of necessary medications
In summary
This patient poll sends a consistent message:
ABPA commonly limits the ability to work, often leading to reduced hours, unstable employment, or early exit from the workforce.
For patients, this experience is shared and valid.
For clinicians, it is a reminder that ABPA is not just a radiological or immunological diagnosis, but a life-limiting condition with real-world consequences.
Hydrocortisone dosing in adrenal insufficiency
Why adrenal insufficiency can happen in people with aspergillosis
Many people with aspergillosis, particularly those with asthma-related conditions such as allergic bronchopulmonary aspergillosis (ABPA) or more severe chronic lung disease, need treatment with steroid medicines at some point. These treatments — often essential to control inflammation, protect the lungs, and improve breathing — may include repeated or long-term courses of steroids such as prednisolone.
When steroid treatment is used over time, it can reduce the body’s own production of cortisol by the adrenal glands. In some people, the adrenal glands do not fully recover, leading to adrenal insufficiency. Cortisol is a vital hormone that helps the body manage energy, illness, infection, and physical stress. When it cannot be made reliably, hydrocortisone replacement is needed to keep the body safe and functioning.
In this situation, hydrocortisone is prescribed to replace the cortisol your body can no longer make, usually after prednisolone has been reduced or stopped, or when prednisolone is no longer needed to control lung inflammation but adrenal support is still required.
Adrenal insufficiency in people with aspergillosis is not a failure and not something you have caused. It is a recognised consequence of necessary treatment for a serious, long-term condition. With the right information, a personalised dosing plan, and medical support, adrenal insufficiency can be managed safely alongside aspergillosis.
A patient guide to everyday (basal) dosing, higher-dose needs, and short-term stress dosing
If you take hydrocortisone because you have adrenal insufficiency, understanding how your dose works — both day to day and during illness or stress — is essential for your safety and wellbeing.
This guide explains:
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What your basal (everyday) dose is for
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Why some people need higher basal doses
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When and how stress dosing is used — and why it is short term
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Why some doctors may hesitate — and how to work safely with them
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Where to find trusted patient and clinician resources
Very important first point ❗
Any changes to your hydrocortisone dose must be agreed in advance with a doctor or specialist nurse who knows your adrenal insufficiency.
This includes:
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Your usual daily dose
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Your stress-dosing (“sick day”) plan
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Emergency injection instructions
This guide does not replace medical advice.
It is designed to help you understand your treatment and communicate clearly with healthcare professionals.
1) Your basal (everyday) hydrocortisone dose
What the basal dose is for
Your basal dose is the hydrocortisone you take on an ordinary day, when you are not ill or under unusual stress. Its purpose is to:
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Replace the cortisol your body cannot make reliably
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Support normal daily function (energy, blood pressure, mood)
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Help your body feel stable and safe
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Reduce the risk of chronic under-replacement
It is replacement, not treatment for inflammation.
A key point many patients are not told
Being consistently under-replaced does not help adrenal recovery.
Ongoing symptoms such as:
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Constant exhaustion
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Dizziness or nausea on standing
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Brain fog or low mood
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Poor tolerance of everyday stress
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Frequent “crashes” or infections
can delay recovery, not speed it. Stability supports healing.
What doctors usually mean by a “physiological” dose
Most adults naturally produce the equivalent of about 15–25 mg of hydrocortisone per day.
Doctors aim for a dose in this range and adjust for:
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Body size
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Activity level
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Other medical conditions
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Individual response
This is replacement, not “high-dose steroids”.
How basal hydrocortisone is usually taken
To mimic the body’s natural rhythm, doses are often split:
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A larger dose in the morning
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Smaller doses later in the day
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Avoiding late evening doses where possible
This supports:
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Energy and blood pressure
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Sleep
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Mood and concentration
Signs your basal dose may be too low
Tell your doctor if you have persistent:
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Severe fatigue despite rest
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“Wired but empty” feeling
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Dizziness, nausea, or salt craving
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Poor concentration or memory
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Low mood or anxiety
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Frequent need for rescue or stress doses
These symptoms matter even if blood tests look reassuring.
Blood tests are only part of the picture
Cortisol and ACTH tests:
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Help with diagnosis
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Are less helpful for adjusting daily dose
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Do not always reflect how well you function
Doctors experienced with adrenal insufficiency rely heavily on how you feel and cope day to day.
The right balance
Rather than “as low as possible,” a safer aim is:
Low enough to avoid overtreatment, but high enough to live a stable, functional life.
Living in constant deficit is not success.
2) When a higher basal dose may be appropriate
Some people with adrenal insufficiency — particularly those with chronic illness — may genuinely need a higher basal hydrocortisone dose (for example 25–30 mg/day).
This does not automatically mean overtreatment.
Well-recognised examples include:
Chronic inflammatory lung disease (including ABPA)
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Ongoing airway inflammation and immune activation
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Recurrent infective or inflammatory flares
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The body may never be in a true “resting” state
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Standard doses may leave patients under-replaced
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A stable higher dose can reduce repeated stress dosing and improve daily function
Frequent infections or slow recovery
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Repeated illness or prolonged recovery
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Frequent “temporary” stress dosing just to cope with everyday life
Long-standing steroid-induced adrenal insufficiency
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Years of prednisolone or similar treatment
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Deep suppression of the adrenal system
Larger body size or higher metabolic demand
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Cortisol needs vary with body size and activity
Autonomic symptoms or low blood pressure
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Postural dizziness or faintness
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Often benefit from a higher morning dose
Clinical clue:
If someone repeatedly needs stress dosing just to manage ordinary days, their basal dose may be too low for their current physiology.
Important reassurance
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Higher basal doses can be appropriate, temporary, or longer-term
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They do not automatically prevent recovery
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Ongoing inflammation and repeated physiological stress suppress recovery more than adequate replacement
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Doses should always be prescribed, documented, and reviewed
3) Stress dosing — when your body temporarily needs more
What stress dosing means
A healthy body automatically makes more cortisol during:
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Illness or infection
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Fever
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Vomiting or diarrhoea
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Injury or trauma
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Severe pain
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Surgery or medical procedures
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Major physical stress
If you have adrenal insufficiency:
➡️ your body cannot do this, so doctors prescribe stress dosing in advance as part of your safety plan.
Stress dosing is essential — but it is short term
Stress dosing is meant to last only as long as the stress lasts.
It covers a temporary increase in need, not your everyday requirements.
What “short term” usually means
Stress dosing may last:
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24–48 hours for minor illness or fever
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Several days for infections or recovery from injury
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During and immediately after surgery or procedures
Your doctor should advise:
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When to increase
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How much to increase
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When and how to return to your usual dose
Why stress dosing should not continue indefinitely
If higher doses are needed for longer, something usually needs review:
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Infection or inflammation has not settled
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The basal dose may be too low
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Another medical problem is present
If stress dosing is still needed after the original stress has passed, it’s time to talk to your doctor.
Stepping back down safely
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Doctors usually advise returning to baseline
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Sometimes a 1–2 day step-down is used
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You should not remain on stress doses “just in case”
Stress dosing does NOT:
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Stop adrenal recovery
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Mean you are “failing”
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Cause long-term harm when used correctly
Not stress dosing can:
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Make you seriously unwell
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Delay recovery
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Lead to adrenal crisis
4) Why some doctors seem hesitant
Doctors outside endocrinology (GPs, A&E, ward teams):
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Are trained to minimise steroid use
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Often think of steroids only as anti-inflammatory drugs
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May rarely manage adrenal insufficiency
What they may not realise immediately:
Your hydrocortisone is replacing a missing hormone — it is essential, not extra.
5) How to advocate safely (with medical backing)
It is appropriate to say:
“I have adrenal insufficiency. My doctor has advised stress dosing during illness to prevent adrenal crisis.”
If you have them, show:
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Your Steroid Emergency Card
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A written stress-dosing plan
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A clinic letter or summary
6) Trusted resources & further support (with links)
The following organisations provide reliable, clinician-endorsed information on adrenal insufficiency, hydrocortisone replacement, stress dosing, and emergency care.
They are widely recognised by NHS endocrinology teams and safe to share with patients, families, and healthcare professionals.
UK patient and professional resources
Addison’s Disease Self-Help Group (ADSHG)
Website: https://www.addisonsdisease.org.uk
What it offers:
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Clear explanations of basal vs stress dosing
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Patient-friendly sick-day rules
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Emergency hydrocortisone injection guidance
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Downloadable patient leaflets used in NHS clinics
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Webinars, helpline, and peer support
Why it’s useful:
ADSHG explicitly supports individualised dosing and crisis prevention.
Society for Endocrinology
Steroid Emergency Card & adrenal crisis guidance:
https://www.endocrinology.org/clinical-practice/steroid-emergency-card/
Why it’s useful:
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Highly trusted by doctors, A&E, and ward teams
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Clear professional wording that reassures non-specialists
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Supports rapid decision-making in emergencies
NHS (England)
Steroid Emergency Card information:
https://www.nhs.uk/conditions/steroid-emergency-card/
Why it’s useful:
-
Official NHS backing
-
Useful for legitimacy in emergency or inpatient settings
International patient resources (useful supplements)
Endocrine Society
Patient information on adrenal insufficiency:
https://www.endocrine.org/patient-engagement/endocrine-library/adrenal-insufficiency
Why it’s useful:
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Clear explanations of cortisol physiology
-
Conservative, authoritative tone
-
Helpful for patients seeking international consensus
National Adrenal Diseases Foundation (NADF)
Website: https://www.nadf.us
What it offers:
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Practical sick-day rules
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Emergency preparedness guidance
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Injection training resources
Particularly helpful for patients with long-standing adrenal insufficiency or frequent illness.
Resources especially relevant for ABPA & chronic lung disease
National Aspergillosis Centre
Website: https://mft.nhs.uk/wythenshawe/services/infectious-diseases/national-aspergillosis-centre/
Why it’s relevant:
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Specialist centre where ABPA and adrenal insufficiency often overlap
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Supports personalised care plans in complex disease
Aspergillosis Trust
Website: https://www.aspergillosistrust.org
Why it’s useful:
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Patient-focused education and advocacy
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Helps explain the chronic physiological stress of ABPA
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Supports conversations about higher basal hydrocortisone needs
Quick-access patient checklist (phone / wallet)
Patients are encouraged to keep:
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Steroid Emergency Card
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Sick-day rules (ADSHG)
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Personal stress-dosing plan (agreed with doctor)
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Clinic letter or summary
Many patients keep photos of these documents on their phone for emergencies.
Final reassurance
These resources support — not replace — medical advice.
They exist to help patients stay safe, informed, and confident when managing hydrocortisone and communicating with healthcare professionals.
Season’s Greeting
As the year draws to a close, we would like to send warm wishes to everyone in the aspergillosis community — patients, families, carers, clinicians, nurses, scientists, and all professionals working to improve care and understanding.
Living with aspergillosis, or supporting those who do, often requires resilience, patience, and compassion. Throughout this year, we have seen remarkable strength from patients, dedication from healthcare teams, and generosity of spirit across our wider community.
At this time of reflection and renewal — whether you mark Christmas, another festival, or simply the turning of the year — we hope you find moments of rest, comfort, and connection. May the days ahead bring steadier health where possible, renewed energy, and continued progress in care, research, and support.
Thank you for being part of this community.
With warmest wishes for peace, kindness, and hope — now and into the New Year.
Potential respiratory hazards of fungal exposure in the residential indoor environment: a systematic review (2025)
Summary of the 2025 Systematic Review for Non-Specialists & Patients
Read full paper here: Potential respiratory hazards of fungal exposure in the residential indoor environment: a systematic review - ScienceDirect
What was this review about?
This review looked at all the scientific evidence from 1990–2025 on how indoor fungi (moulds) in homes affect people’s breathing and general respiratory health. It examined 94 studies, mapping out where fungi come from, which species appear most often, and how they affect the lungs, nose, throat, and immune system.
Key Findings in Plain Language
1. The biggest sources of indoor mould are dampness and building damage
Homes with water leaks, damp walls, damaged materials and poor ventilation are the most common sources of fungi—especially Aspergillus and Penicillium. These thrive in wet building materials, bathrooms, kitchens, drains, air-conditioning systems and even water dispensers.
2. Indoor fungi are strongly linked to a wide range of respiratory symptoms
Across many countries, indoor fungal exposure was associated with:
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Asthma and asthma flare-ups
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Allergic rhinitis (blocked or runny nose)
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Chronic cough and throat irritation
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Adenoid enlargement in children
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Hypersensitivity pneumonitis (allergic inflammation of the lungs)
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Reduced lung function
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Even pulmonary haemorrhage in rare cases
The review shows that even everyday exposure—not just visibly mouldy homes—can worsen respiratory health.
3. Some fungi are more strongly associated with illness
Important associations include:
-
Aspergillus → asthma symptoms, COPD exacerbations, throat irritation, hypersensitivity reactions
-
Penicillium → asthma, allergic rhinitis, hypersensitivity pneumonitis
-
Alternaria → childhood asthma risk
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Candida & Fusarium → present in wet areas such as bathrooms and may affect vulnerable individuals
4. The geographic picture is uneven
Most research comes from high-income, temperate countries. There are major evidence gaps in tropical and subtropical regions, where humidity is high and fungal exposure is likely worse. This limits current global understanding of risk.
5. Prevention works — but public awareness is low
Simple actions (cleaning, improved ventilation, addressing leaks, correct humidity ranges) can radically reduce fungal burden. One study showed 80–90% reduction in airborne mould counts after residents were given basic remediation advice.
What’s New or Important in This 2025 Review?
1. A fully integrated “source → species → disease → location” map
The review is the first to link fungal sources, the exact fungi found, the diseases they cause, and where the evidence comes from, creating a multi-layered evidence map. This helps identify:
-
Which household features pose the highest risk
-
Which fungi are clinically most important
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Where research gaps exist
2. Highlights the major global research imbalance
It emphasises that very little evidence exists from low-income and tropical areas—where exposure may be far more severe. This is a call for equity and better global surveillance.
3. Shows that fungi may affect more than the lungs
The review notes new evidence that fungal exposure may also influence neurological and immune-mediated symptoms, suggesting mould exposure could have broader health effects than traditionally recognised.
4. Identifies major gaps in identifying which fungal species cause harm
Many studies only measure “mould level” without identifying the fungus. The review argues for better fungal detection technologies, such as:
-
Portable real-time samplers
-
Multi-omics (DNA, RNA, metabolites)
-
Long-term cohort studies
These tools could finally clarify which fungi cause which illnesses.
5. Strong emphasis on emerging technologies for prevention
Including:
-
UV and photocatalytic TiO₂ devices
-
Improved antifungal cleaning agents
-
Building materials designed to resist mould growth
-
Volcanic minerals and clays that absorb harmful compounds
Why This Review Matters (for Patients, Carers, and Clinicians)
1. It shows mould is not “just an allergy problem”
Indoor fungi can worsen or trigger asthma, COPD, hypersensitivity pneumonitis, chronic sinus issues, and may even influence immune and neurological health. This validates patient experiences where damp homes worsen symptoms.
2. It provides strong evidence for housing-related health advocacy
Patients can use this to:
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Request landlord repairs
-
Support home assessments
-
Advocate for rehousing if severe mould is present
-
Justify humidifier/dehumidifier use, and ventilation improvements
3. It highlights the importance of early remediation
Even simple cleaning and remediation steps can dramatically reduce mould burden and symptoms—important for families, vulnerable groups, and those with chronic lung disease.
4. It gives clinicians a clearer evidence base
Respiratory teams can use this to:
-
Recognise when housing contributes to disease flare-ups
-
Understand which conditions are most strongly linked to indoor fungi
-
Make better-informed referrals for environmental health assessments
5. It builds a scientific foundation for future guidelines
The authors point out that national building codes, indoor air quality policies, and public health guidance lag behind the evidence—and this review is intended to inform future regulation.
Who Does This Help Most?
Patients with:
-
Asthma
-
Allergic bronchopulmonary aspergillosis (ABPA)
-
Aspergillus bronchitis
-
COPD (especially those with fungal-associated exacerbations)
-
Hypersensitivity pneumonitis
-
Children with recurrent respiratory infections
-
Anyone living in damp, mouldy, water-damaged, or poorly ventilated homes
Clinicians:
Respiratory physicians, GPs, ENT specialists, allergists, immunologists.
Policy & Housing Professionals:
Public health teams, environmental health officers, social landlords, housing associations.
Researchers:
Those developing diagnostics, fungal exposure studies, indoor air quality monitoring, or patient-centred environmental interventions.
Aspergillosis Patient Conference 2025 – summary and recording
The Aspergillosis Patient Conference 2025 took place online on 29 November 2025. The event was co-organised and co-presented by the National Aspergillosis Centre (NAC) and The Aspergillosis Trust, in collaboration with the European Lung Foundation (ELF).
The free conference brought together people living with aspergillosis, carers, patient advocates, clinicians and researchers from across Europe and beyond. Its focus was firmly patient-centred, combining clinical expertise with lived experience to improve understanding, awareness and care.
🎥 The full conference recording is now available to watch online, enabling anyone who missed the live event to benefit from the sessions and discussions.
What the conference covered
Across the programme, speakers explored:
-
What aspergillosis is and the different forms it can take
-
Symptoms and diagnostic challenges, including delays in recognition
-
Current treatment and management approaches
-
Living with aspergillosis, shared directly by patients
-
What needs to improve, including awareness, education and access to specialist care
Live questions, polling and discussion ensured that patient priorities and real-world concerns shaped the conversation throughout.
Speakers and perspectives
The conference featured a broad range of patient advocates and clinical experts, including:
-
People with lived experience of chronic pulmonary aspergillosis (CPA) and allergic bronchopulmonary aspergillosis (ABPA)
-
Representatives from NAC, The Aspergillosis Trust and the ELF Aspergillosis Patient Advisory Group
-
Respiratory physicians, infectious disease specialists and researchers involved in European clinical guidelines and research
This mix ensured that sessions reflected both medical best practice and day-to-day patient realities.
Who the recording is useful for
The on-demand recording is particularly valuable for:
-
People living with aspergillosis and related lung conditions
-
Family members, carers and supporters
-
Healthcare professionals seeking a patient-focused overview
-
Patient organisations and advocates working in respiratory or fungal disease
Why this conference matters
Aspergillosis remains under-diagnosed and poorly understood, despite its significant impact on health and quality of life. This conference highlighted:
-
The importance of patient voices in education and guideline development
-
The need for earlier diagnosis and clearer care pathways
-
The value of collaboration between specialist centres, patient charities and European organisations
By making the recording freely available, NAC, The Aspergillosis Trust and ELF have ensured the conference continues to support patients, carers and professionals well beyond the live event.
Using Radiopaedia and Online Imaging Resources Safely: What Expert Patients and Non-Specialist Clinicians Need to Know
Online radiology education platforms such as Radiopaedia (see aspergillosis images here) have transformed access to medical knowledge. They provide high-quality explanations of imaging findings, annotated examples, and differential diagnoses that are invaluable for learning, teaching, and patient empowerment.
For expert patients living with long-term conditions, and for non-specialist clinicians working outside radiology, these resources can greatly improve understanding of scan reports and discussions with healthcare teams. However, it is important to understand what these tools can – and cannot – do.
Radiopaedia is an educational resource, not a diagnostic service
Radiopaedia is designed to teach pattern recognition and radiological reasoning, not to provide individual diagnoses. The cases shown are curated examples, often with classic features, and are presented without the full clinical complexity that accompanies real patients.
Real-world imaging interpretation requires integration of:
-
Clinical history and symptoms
-
Laboratory results (for example inflammatory markers, microbiology, immunology)
-
Prior imaging and disease progression
-
Treatment history and response
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Knowledge of common mimics and incidental findings
This clinical synthesis cannot be replicated by reviewing example images alone.
Why expert radiologist review still matters
For many diagnoses, there is no substitute for a radiologist formally reviewing and interpreting the imaging.
This is particularly true when:
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Findings are subtle or evolving
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Multiple conditions coexist (for example bronchiectasis, infection, scarring, and inflammation together)
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Imaging appearances overlap between diseases
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Treatment decisions depend on small but important changes over time
Radiologists are trained to recognise not only “textbook” appearances, but also atypical, incomplete, or misleading patterns, and to weigh uncertainty appropriately in their reports.
Imaging patterns are rarely diagnostic in isolation
Many imaging features are non-specific. For example:
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Cavities can be caused by infection, inflammation, malignancy, or prior disease
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Nodules may represent infection, scarring, inflammation, or benign change
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Mucus plugging can occur in asthma, infection, allergic disease, or chronic airway disease
Educational resources often present differential diagnoses clearly, but deciding which diagnosis applies to a specific patient requires clinical judgment and experience.
A particular note for chronic lung and fungal disease
In complex conditions such as chronic lung disease, allergic lung disease, or fungal infections, imaging interpretation is especially nuanced. Appearances may change slowly, fluctuate with treatment, or overlap with other long-standing abnormalities.
Small changes that are significant to a specialist team may appear minor or ambiguous when viewed without context. Conversely, dramatic-looking findings may represent stable or inactive disease.
This is why specialist radiology input, often alongside multidisciplinary discussion, remains essential.
How expert patients and clinicians should use Radiopaedia
Used appropriately, Radiopaedia can:
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Improve understanding of scan terminology
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Help frame informed questions for clinicians
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Support education and shared decision-making
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Aid non-specialists in recognising when further advice is needed
It should not be used to:
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Self-diagnose based on image similarity
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Override formal radiology reports
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Draw conclusions without clinical correlation
The key message
Radiopaedia and similar platforms are powerful educational tools. They enhance knowledge, confidence, and communication. But for many diagnoses, they complement rather than replace expert radiologist assessment.
The safest and most effective approach is to use educational resources alongside formal imaging reports, specialist input, and clinical discussion — not instead of them.
Beyond guidelines: what do I need to know when dealing with fungal diagnostics?
Cornelia Lass-Flörl. Clinical Microbiology and Infection (2025)
Why this paper matters
Diagnosing invasive fungal infections (including aspergillosis) remains difficult in real-world practice. Guidelines exist, but patients and clinicians often experience confusing or apparently conflicting test results. This narrative review explains why that happens and how results should be interpreted in context, particularly for Aspergillus infections.
Key messages relevant to aspergillosis
1. Your immune system strongly affects test results
The paper clearly explains that diagnostic tests behave very differently depending on immune status:
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In neutropenic or heavily immunosuppressed patients, antigen tests such as galactomannan tend to perform better, while antibody tests often fail.
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In immunocompetent or non-neutropenic patients, including many with chronic pulmonary aspergillosis (CPA), Aspergillus IgG antibody tests are often positive and clinically useful.
This helps explain why some patients are told their blood tests are “negative” despite ongoing disease.
2. Where the sample comes from matters
For lung aspergillosis:
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Bronchoalveolar lavage (BAL) samples are far more informative than blood.
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Blood cultures are usually unhelpful for Aspergillus, as the fungus rarely circulates in the bloodstream.
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A positive sputum culture may represent colonisation rather than infection, especially in people without severe immune suppression.
This reinforces an important patient message: a single test result is rarely enough.
3. Antifungal treatment can hide infection
Starting antifungal therapy early can:
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Make cultures negative
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Reduce antigen levels (e.g. galactomannan)
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Complicate microscopy interpretation
This explains why some patients experience false reassurance from negative tests after treatment has already begun. Serial testing and clinical judgement are often more informative than a single result.
4. False positives and cross-reactivity are common
The review highlights important pitfalls:
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β-D-glucan can be positive due to bacterial infections or medical materials, not just fungi
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Galactomannan can cross-react with other fungi (e.g. Fusarium)
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Mixed infections can occur in immunosuppressed patients
This supports a cautious interpretation of “positive” results and explains why clinicians may hesitate to diagnose aspergillosis based on one test alone.
5. Colonisation vs infection is a central challenge
A particularly relevant section for aspergillosis patients explains:
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Aspergillus can live in airways without causing invasive disease
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Diagnosis relies on combining symptoms, imaging, risk factors, and multiple tests
This reflects the lived experience of many patients with bronchiectasis, asthma, or chronic lung disease.
Strengths of the paper
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Written by a leading international mycology expert
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Pragmatic and clinically grounded
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Explains why guidelines don’t always fit individual patients
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Particularly strong on Aspergillus diagnostics, including CPA and invasive disease
Limitations
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Focuses mainly on invasive fungal infections; allergic and chronic syndromes are discussed less
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Aimed primarily at clinicians and laboratories, not patients
Take-home message for patients
There is no single “definitive” test for aspergillosis. Results depend on immune status, sample type, timing, and prior treatment. Negative tests do not always mean absence of disease, and positive tests do not always mean active infection.
This paper strongly supports the multidisciplinary, experience-based approach used in specialist centres such as the National Aspergillosis Centre.
Aspergillosis Trust – A Community for Patients
The Aspergillosis Trust is a patient-led charity dedicated to helping people affected by aspergillosis and supporting the wider community of patients, carers, families, and friends. It exists to make life with aspergillosis easier by *raising awareness, sharing information, and bringing people together so no one has to go through this alone. *Aspergillosis Trust Charity
Although aspergillosis is a rare condition, the Trust’s vision is simple and powerful: to make aspergillosis widely recognised so it can be diagnosed earlier, treated more effectively, and better understood — by health professionals and the general public alike.
Why the Trust Matters to You
Shared Experience and Support
The Aspergillosis Trust understands what it’s like to live with a rare lung condition because it’s run by patients and carers themselves. This means the insights and support it offers come from real experience, not just medical textbooks. It connects people who have walked similar paths, helping reduce isolation and fostering practical encouragement.
Information You Can Use
The Trust supports people around the world by providing information, resources, and real and virtual support networks. Whether you’re newly diagnosed or navigating long-term treatment, the Trust’s curated links, articles, and connections can help you find reliable answers and understand your options.Charity Commission
Raising Awareness and Understanding
By amplifying patient voices and sharing stories, the Trust helps increase understanding of aspergillosis among doctors, nurses, and healthcare teams. This awareness work helps ensure more people are referred for specialist care sooner, leading to better outcomes.
Where Community Meets Practical Help
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The Trust offers a network of support and encouragement for people living with aspergillosis.
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It provides curated links and resources to help you find information relevant to your situation.
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Through awareness campaigns and shared patient stories, it works to improve understanding and recognition of aspergillosis among clinicians and the public.
Whether you’re looking for knowledge, community, or reassurance that others understand what you’re going through, the Aspergillosis Trust is a valuable companion on your journey.
For more about how to connect or get support, you can visit their website or reach out directly via their contact page.
The Chief Medical Officer’s Annual Report 2025: Infections
What this document is
The Chief Medical Officer’s Annual Report 2025: Infections is a major national review produced by the Chief Medical Officer for England, Professor Chris Whitty. It is a comprehensive, 371-page assessment of:
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Current infectious disease threats in England
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How infections are changing (ageing population, travel, globalisation, antimicrobial resistance)
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What the NHS, public health services, and government need to do to protect the public
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Key topics including vaccines, fungal infections, infection in older adults, housing, climate change and more
It includes contributions from national experts—including a full chapter dedicated to fungal infections (section 4.2) and others that touch on issues highly relevant to aspergillosis patients (vaccination, antimicrobial resistance, respiratory infections, housing, and vulnerable populations)
cmo-annual-report-2025-infectio…
Why it is published
The report is published each year to:
1. Advise Government
It sets out the CMO’s expert recommendations on how England should prepare for current and future infection threats, including pandemics, AMR, and emerging fungal pathogens.
2. Influence NHS planning and investment
The report highlights weaknesses in the system and proposes reforms.
This year’s report strongly emphasises:
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Better infection services
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Stronger surveillance
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Improving vaccine uptake
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Protecting older adults (now the group with most infection-related deaths)
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Expanding superspecialist expertise—including fungal disease expertise
3. Inform clinicians, researchers, and public health professionals
It provides a current consensus on infectious disease trends, evidence, and priorities.
Chapters are written by leading UK experts in each field (e.g., fungal infections, antimicrobial resistance, vaccines, imported infections)
4. Educate the public and third-sector organisations
The report is open-access and intended to help the public understand why infection preparedness matters and why actions like vaccination, stewardship, and early diagnosis are essential.
Who reads it
The report is widely used across:
Government
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Department of Health and Social Care
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UKHSA
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Cabinet Office (emergency planning)
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Local authorities
NHS and clinical services
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Infectious disease physicians
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Respiratory teams
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Microbiology and virology specialists
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Primary care networks
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ICS / ICB teams planning local services
Researchers and academic institutions
It sets the direction for future research and funding priorities, including for fungal disease and AMR.
Charities, patient organisations and advocates
Groups representing people with chronic, infectious, or respiratory illness read the report to understand system-level changes and advocate for patient needs.
Industry and diagnostics developers
They monitor future needs for antifungals, vaccines, and diagnostic tools.
Why this report is important for aspergillosis patients
Several aspects of the 2025 report directly relate to people with ABPA, CPA, SAFS or Aspergillus bronchitis.
1. Fungal infections are recognised as a major emerging threat
The report includes a dedicated chapter on fungal infections (section 4.2), describing:
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Rising antifungal resistance
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Expanding fungal threats globally
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The importance of specialist mycology expertise
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The risks from agricultural fungicides
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The need for improved surveillance and diagnostics
This formal recognition strengthens the case for specialised centres like the National Aspergillosis Centre.
2. It highlights the need for superspecialists in rare and imported infections—including fungal disease
The CMO states that England requires:
“superspecialists to provide advice on and management of infections including… rarer [infections] such as fungal infections.”
cmo-annual-report-2025-infectio…
This directly supports the role and expansion of the NHS mycology services, which Aspergillus patients rely on for accurate diagnosis and treatment.
**3. It reinforces the importance of antimicrobial and antifungal stewardship
For people with aspergillosis, this matters because:
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Resistance to azoles is rising—and the report explicitly mentions agricultural fungicides as part of the problem.
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Stewardship ensures patients receive appropriate antifungals, monitored carefully and adjusted safely.
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It argues for more drug development, which is essential because current antifungal options are limited.
4. It emphasises diagnosing infection in older adults
Older adults are increasingly vulnerable to infections and complications, especially respiratory ones.
The report stresses that:
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Infection in older adults often has more serious consequences
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Early diagnosis is essential
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Access to specialist care must improve
Since many aspergillosis patients are older with complex lung disease, this section validates the need for better recognition and earlier referral.
5. Housing and damp are recognised as infection risks
The chapter Housing and Infection (section 7.2) discusses how substandard housing—including damp and mould—drives respiratory illness.
Although not Aspergillus-specific, it gives important public health backing for patients needing remediation and better housing conditions.
6. The report strengthens the case for national fungal surveillance
Key recommendations include:
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Improving surveillance of antimicrobial and antifungal resistance
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Better mapping of emerging pathogens
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More research into fungal diseases
These system-level improvements directly benefit aspergillosis patients by helping earlier detection and better treatment options.
7. It raises awareness of fungal disease at national level
Simply being included in a flagship CMO report is important.
It means:
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Policymakers can no longer overlook fungal infections
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Funding for mycology services becomes easier to justify
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Clinicians across the NHS will become more aware of CPA, ABPA and related diseases
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It helps reduce the years-long diagnostic delays many patients face
In short — why Aspergillus patients should care
The 2025 CMO Annual Report is one of the most influential documents shaping future infectious disease strategy in England. For aspergillosis patients, it is important because:
✓ Fungal infections are explicitly highlighted as a growing threat
✓ Specialist mycology services are recognised as essential
✓ Antifungal resistance is identified as a major risk requiring action
✓ Better diagnosis and monitoring of at-risk groups is encouraged
✓ Housing, climate, age and vulnerability—all major issues for patients—are addressed
✓ It strengthens the case for investment in NAC and wider mycology networks
This report can be used by patient groups, NAC advocates, and healthcare professionals to press for:
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More referrals
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Better awareness among GPs and respiratory teams
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Expanded mycology diagnostic capacity
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Greater research funding
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Better antifungal stewardship
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National fungal surveillance