GAtherton

Why It Can Be Hard to Clear Carbon Dioxide (CO₂) From the Lungs in Aspergillosis

When we breathe, oxygen comes in and carbon dioxide (CO₂) goes out. For people living with aspergillosis (ABPA or CPA), and sometimes with other conditions like severe asthma, COPD, or bronchiectasis, this process can be much more difficult.

🔴 Why this happens

  • Narrow or inflamed airways
    In ABPA or asthma, swelling and tightening of the breathing tubes can trap air inside.

  • Collapsed or floppy airways
    In COPD and bronchiectasis, airways may close too soon when you breathe out, leaving CO₂ stuck in the lungs.

  • Mucus and plugs
    Thick or sticky mucus — common in ABPA, bronchiectasis, and COPD — blocks airways and reduces airflow.

  • Scarred or damaged lungs
    CPA can create cavities and scarring that make air movement less efficient.

  • Tired breathing muscles and fatigue
    Long-term illness, steroid use, or simple exhaustion can weaken the diaphragm and chest muscles, making it harder to breathe out fully.

🟢 What can help

  • Pursed-lip breathing
    Inhale gently through your nose, then breathe out slowly through pursed lips (like blowing out a candle). This keeps airways open longer so CO₂ can escape.

  • Diaphragm (belly) breathing
    Using your stomach muscles for slower, deeper breaths improves oxygen and CO₂ exchange.

  • Clear the mucus
    Daily airway clearance (physio techniques, huff coughing, or devices like Acapella, Flutter, Aerobika) can stop mucus building up and blocking airways.

  • Pulmonary rehabilitation
    Specialist exercise and breathing training improve stamina, breathing control, and lung efficiency.

  • Find the best position
    Sitting upright or leaning forward slightly often makes it easier to breathe out during flare-ups.

  • Medical treatments
    Your team may use antifungals, steroids, inhalers, or nebulisers to reduce inflammation and mucus.
    If CO₂ levels remain too high, oxygen therapy or breathing support machines (like BiPAP or CPAP) may be needed.

👩‍⚕️ Who can help most

The best place for personalised advice is usually a respiratory physiotherapist.
They can:

  • Teach you the right breathing techniques

  • Show you how to clear your airways effectively

  • Support you with safe exercise and pacing strategies

🟦 What to do if you panic for breath

Feeling panic when breathless is common — but panic can make breathing even harder. Try these steps:

  1. Stop and sit upright — lean slightly forward with your arms supported on a table or your knees.

  2. Focus on breathing out — use pursed-lip breathing (in through the nose, out slowly through pursed lips).

  3. Slow things down — count “in for 2, out for 4” to calm breathing.

  4. Loosen tight clothing — open collars or waistbands to ease pressure on the chest.

  5. Use your reliever inhaler or nebuliser if prescribed.

  6. Stay calm with grounding techniques — focus on your surroundings (e.g. name things you see or hear) to reduce panic.

⚠️ When to seek urgent help

  • If your breathing does not improve after following these steps.

  • If you are too breathless to speak in full sentences.

  • If you feel faint, confused, or unusually drowsy.

  • If you have sudden chest pain or start coughing up a lot of blood.

➡️ Call 999 or go to A&E immediately in these situations.

✅ Key message

For patients with aspergillosis, especially when combined with asthma, COPD, or bronchiectasis, clearing CO₂ can be harder because of blocked or damaged airways, mucus, and fatigue.

  • Learning breathing techniques

  • Clearing mucus regularly

  • Seeking advice from a respiratory physiotherapist

  • Knowing what to do if you panic for breath

…can all make a big difference in helping you breathe more easily and safely.

by GAtherton

Why Does Prednisolone Affect Energy Differently?

If you live with aspergillosis, you may be prescribed prednisolone, a type of steroid medicine that reduces inflammation in the lungs. Many patients notice changes in their energy levels — but not everyone experiences the same effects.

Why some feel “full of energy”

  • Boosting effect: Prednisolone can act a bit like adrenaline, raising blood sugar and speeding up metabolism.

  • Improved breathing: When inflammation in the lungs is brought under control, it may feel easier to breathe, which can make you more energetic.

  • Mood lift: In some people, steroids can trigger feelings of alertness or even mild euphoria.

Why others feel very tired

  • Sleep disturbance: Prednisolone can interfere with your normal sleep pattern, especially if taken later in the day. Poor sleep = daytime fatigue.

  • Body effects: Steroids can cause muscle breakdown, fluid changes, or blood sugar swings, which may leave you feeling drained.

  • Adrenal suppression: If you’ve been on steroids for a while, your body’s own cortisol production may slow down, leading to tiredness, especially during dose reductions.

  • Underlying illness: Even if the steroid helps, aspergillosis itself (with coughing, infections, or bleeding) can still leave you exhausted.

What you can do

  • Take in the morning: This reduces the chance of sleep problems.

  • Plan rest breaks: Listen to your body if you’re feeling tired.

  • Track your symptoms: Notice if your energy changes when doses go up or down.

  • Talk to your doctor: If you feel extremely fatigued or “too wired to sleep,” your team may be able to adjust your dose, timing, or taper.

✅ Key message for patients:
It is normal for people with aspergillosis to respond differently to prednisolone — some feel more energetic, while others feel exhausted. Both reactions are common. If the effects are troubling, discuss them with your medical team so your treatment can be adjusted safely.

by GAtherton

Chronic Lung Disease and Relationships: The Emotional Impact for Patients, Partners, Friends & Family

Living with chronic lung disease — such as ABPA, CPA, bronchiectasis, or severe asthma — affects far more than the body.
It alters the emotional landscape between the person with the illness and the people around them.
This isn’t just about physical limitations — it’s about how empathy, energy, guilt, and emotional resilience are shared (or strained) over time.

This guide explores both perspectives — the patient and the healthy person — and offers ways to keep relationships strong.

1. The Patient’s Perspective

For the person with the illness, the condition is ever-present:

  • Constant awareness – Every breath, plan, or activity is influenced by symptoms, medication schedules, and the risk of flare-ups.

  • Invisible symptoms – You can feel like you’re drowning without looking or sounding breathless. The absence of obvious signs often means people underestimate how unwell you are.

  • Need for validation – Being listened to, believed, and taken seriously is essential. Dismissive comments such as “you don’t sound wheezy” can feel like a denial of your lived reality.

  • Loss of role – Illness can mean stepping back from work, family responsibilities, or social life, leaving you feeling less “you” and more “the patient.”

2. The Healthy Person’s Perspective

Even the most loving partner, friend, or family member has finite emotional reserves:

  • Empathy fatigue – Offering compassion in a crisis is natural; sustaining it daily for years is emotionally exhausting.

  • Positivity limits – Staying upbeat to encourage the patient can drain energy, sometimes leading to withdrawal.

  • Healthy guilt – Feeling bad for having health, energy, freedom, or the ability to enjoy life.

  • Emotional self-protection – Avoiding deep illness discussions to manage their own fear, helplessness, or sadness.

  • Mismatch of experience – The healthy person dips in and out of illness awareness, while the patient lives in it constantly.

3. Patient Guilt

While healthy guilt is common, patient guilt is just as powerful:

  • Feeling like a burden – Worrying that you limit others’ activities, social life, or freedom.

  • Changing the relationship – Feeling bad that a partner now has to act partly as a carer.

  • Financial strain – Guilt over reduced income or increased expenses.

  • Impact on others’ wellbeing – Feeling responsible for your partner’s, friends’, or family’s stress or fatigue.

  • Mood and personality changes – Guilt about being irritable, anxious, or withdrawn because of the illness or medication effects.

4. Common Relationship Challenges

For partners:

  • Role shift – Moving from equal partnership to a dynamic where one is part-carer.

  • Social imbalance – One may want to go out more than the other can manage.

  • Resentment risk – If needs are unspoken, one may feel abandoned and the other may feel trapped.

For family:

  • Unequal support – Some relatives engage, others withdraw.

  • Generational differences – Older relatives may minimise invisible illness (“just push through”).

  • Positive minimising – Trying to “cheer you up” by downplaying symptoms, which can feel invalidating.

For friends:

  • Friendship drift – Reduced shared activities can lead to less contact.

  • Fear of offending – Friends stop inviting you to events so you won’t have to say no.

  • Discomfort with illness – Some disappear entirely rather than risk awkwardness.

5. The Psychology Behind These Changes

  • Finite empathy and energy – The brain isn’t wired for sustained crisis-mode support.

  • Visible vs. invisible illness gap – We respond more readily to what we can see (limping, coughing) than what we can’t (chest tightness, fatigue).

  • Avoidance coping – Healthy people sometimes step back emotionally to manage their own distress.

  • Healthy guilt – Creates distance when the healthy person hides their joy to avoid hurting you.

  • Patient guilt – Creates distance when you hold back your needs to avoid burdening them.

6. Strategies for Moving Forward Together

For Patients:

  1. Be specific – Say what you need: “I need you to just listen” or “Could you help with…?”

  2. Make space for non-illness moments – Talk about hobbies, TV shows, shared memories.

  3. Recognise recharge needs – Allow healthy people breaks from illness talk without taking it as a lack of care.

  4. Value their life too – Encourage them to enjoy activities even if you can’t join.

For Partners, Friends, and Family:

  1. Believe them – Accept what the patient says about symptoms, even if they “look fine.”

  2. Share your feelings – Guilt, overwhelm, or fear are normal; discussing them prevents silent withdrawal.

  3. Keep inviting – Offer options, but no pressure — inclusion matters more than attendance.

  4. Balance care with normality – Don’t let every interaction be about the illness.

7. Talking About Guilt (Both Sides)

  • Name it openly – “I feel guilty for being well” or “I feel guilty for needing so much help.”

  • Acknowledge the illness isn’t anyone’s choice – Blame the condition, not each other.

  • Agree on boundaries – Both lives matter, both deserve joy.

  • Share in two directions – Illness updates and everyday life keep relationships in balance.

8. Final Thought

Chronic illness can strain relationships, but it can also deepen them — if both sides:

  • Understand that empathy, positivity, and energy are finite.

  • Recognise both healthy guilt and patient guilt.

  • Protect space for joy, humour, and connection beyond the illness.

Love doesn’t mean living in the illness 24/7 — it means walking alongside each other, even when the paths look different.

by GAtherton

Information on Allergic BronchoPulmonary Aspergillosis (ABPA) / SAFS – For Family and Friends

Print out or share electronically

WHAT IT IS
ABPA (Allergic Bronchopulmonary Aspergillosis) and SAFS (Severe Asthma with Fungal Sensitisation) are allergic reactions to a common fungus, Aspergillus. In some people with asthma, the immune system overreacts to spores in the air, causing inflammation, swelling, and mucus plugs in the lungs.

WHAT IT'S NOT

  • Not contagious – you can't catch it.

  • Not poor hygiene – Aspergillus is everywhere in the air.

  • Not the patient's fault – flare-ups happen because of the condition, not something they did or didn't do.

WHY AREN'T OTHERS AFFECTED?
Most people's lungs clear these spores easily. In ABPA/SAFS the immune system reacts too strongly – more likely with long-standing asthma, severe allergies, damaged airways (e.g., bronchiectasis), or a genetic tendency. It's not weakness or lifestyle choices – often just lung history and bad luck.

TYPICAL SYMPTOMS

  • Wheezing, cough (sometimes with mucus plugs)

  • Breathlessness

  • Severe fatigue

  • Sometimes coughing up blood

WORST SYMPTOMS

  • Mucus plugs – thick, sticky clumps blocking airways, making breathing suddenly harder.

  • Intense coughing – can be exhausting, cause chest pain, and disrupt sleep.

TREATMENT

  • Anti-inflammatory medicines (often steroids)

  • Antifungals to reduce Aspergillus in the airways

  • Biologics for severe asthma/allergic inflammation

  • Monitoring with blood tests, breathing tests, and scans

THE REALITY
This condition can dominate daily life. On bad days the person may not be able to do much at all. Energy and breathing can change day-to-day (even hour-to-hour). If plans are cancelled, it isn't a lack of interest – it's the illness. Flare-ups can also make people feel short-tempered – a natural reaction to frustration, not a lack of care. Many people also live with a constant awareness of environmental risks – weighing up every new place or activity for dust, damp, or spores. This can feel exhausting and may lead them to avoid situations that others wouldn’t think twice about.

LOOKING AHEAD

  • With good control – Many people manage their symptoms well, reduce flare-ups, and keep active with the right treatment and avoidance of triggers.

  • Risks – Without good control, repeated flare-ups can slowly damage the lungs and lead to bronchiectasis.

  • Change over time – Some improve and need less treatment; others have ongoing ups and downs. Early action on flare-ups makes a big difference.

ENVIRONMENTAL TRIGGERS & PROTECTION
Some people with ABPA or SAFS have to avoid dust, mould, strong smells, smoke, and damp places – these can trigger flare-ups. Activities like gardening, compost turning, or DIY can be risky because they release fungal spores into the air. Wearing a well-fitting mask (e.g., FFP2/FFP3) can help reduce exposure – it's about staying well, not being antisocial.

HOW FRIENDS AND FAMILY CAN BEST HELP

  • Be flexible with plans – energy and breathing can change suddenly; last-minute cancellations aren't personal.

  • Help avoid triggers – choose low-dust, low-mould venues and activities.

  • Support treatment routines – lifts to appointments, collecting prescriptions, or reminders if welcome.

  • Listen without judgement – let them share symptoms and frustrations.

  • Encourage safe activities – suggest hobbies and outings with low environmental risk.

  • Show affection and reassurance – a hug, a kind message, or checking in can mean a lot.

MORE INFORMATION & SUPPORT
National Aspergillosis Centre (UK): https://mft.nhs.uk/wythenshawe/services/infectious-diseases/national-aspergillosis-centre/
Patient information & community: https://aspergillosis.org

by GAtherton

Chronic Pulmonary Aspergillosis (CPA) – Information For Family and Friends

Print this off or share electronically

WHAT IT IS
CPA (Chronic Pulmonary Aspergillosis) is a long-term lung infection caused by the Aspergillus fungus. It often develops where lungs are already damaged (e.g., TB, COPD, bronchiectasis, sarcoidosis) and may form cavities, sometimes with fungal balls (aspergillomas).

WHAT IT'S NOT

  • Not contagious – you can't catch CPA.

  • Not poor hygiene – spores are everywhere in the air.

  • Not the patient's fault – flare-ups or setbacks happen because of the illness, not something they did wrong.

WHY AREN'T OTHERS AFFECTED?
Most people remove spores without trouble. CPA appears when lungs are already damaged or the immune system can't fight the fungus well – after past infections, chronic lung disease, or weakened defences. It's not about choices; it's lung history and chance.

TYPICAL SYMPTOMS

  • Persistent cough (sometimes with blood)

  • Breathlessness

  • Fatigue and low energy

  • Weight loss

  • Recurring chest infections

WORST SYMPTOMS

  • Coughing up blood – can be small streaks or larger amounts; sudden and frightening; urgent if heavy.

  • Severe fatigue – can stop even simple tasks; not just ‘tiredness’.

TREATMENT

  • Long-term antifungal medication

  • Regular scans and blood tests

  • Surgery in selected cases

THE REALITY
CPA is a serious, long-term condition. On bad days, people may not be able to do much at all. Symptoms can dominate daily life and limit social plans – cancelled arrangements are the illness talking, not them. It can also make people feel grumpy or irritable – not because they don't care, but because constant symptoms, tiredness, and limits on daily life are frustrating and exhausting. There’s often a mental load too – always thinking about avoiding dust, damp, or mould spores, and sometimes feeling overcautious about activities like going on boats, visiting old buildings, or anywhere that might harbour moisture or mould. This risk-checking is a form of self-protection, even if it means missing out.
It’s important to mention the mood swings and fatigue caused not only by the disease but also by the medication. For some, constant hand tremors are also part of daily life — these are often misunderstood by others.

LOOKING AHEAD

  • With effective treatment – Many people can keep the infection stable for years, control symptoms, and stay independent.

  • Risks – CPA can slowly progress, and severe flare-ups (like coughing large amounts of blood) may need urgent treatment.

  • Change over time – The illness can be stable for long periods, but it often needs lifelong monitoring and treatment changes. Support from specialists helps keep people well for longer.

ENVIRONMENTAL TRIGGERS & PROTECTION
Some people with CPA need to avoid environments with high levels of dust or fungal spores. This includes gardening, composting, building work, or damp/mouldy places. Wearing a protective mask during these activities can help reduce risk. Avoiding these triggers is about preserving lung health – not being fussy or antisocial.

HOW FRIENDS AND FAMILY CAN BEST HELP

  • Respect limits – breathlessness, fatigue, or coughing up blood can stop plans at short notice; it's not a choice.

  • Minimise exposure risks – avoid inviting them to dusty, damp, or mouldy places.

  • Offer practical help – driving to appointments, carrying shopping, or helping at home during flare-ups.

  • Be patient with mood changes – grumpiness can come from exhaustion and constant vigilance against triggers.

  • Talk openly about safety – if you suggest an outing, ask “Would this feel safe for you?”

  • Stay connected – even if they can't join in physically, a call or small gesture keeps them included.

MORE INFORMATION & SUPPORT
National Aspergillosis Centre (UK): https://mft.nhs.uk/wythenshawe/services/infectious-diseases/national-aspergillosis-centre/
Patient information & community: https://aspergillosis.org

by GAtherton

Damp, Cold, and Poor Housing – Why It Matters for Lung Health

This briefing from the House of Commons Library (2025) looks at how poor housing conditions—especially damp, mould, and cold homes—affect health and what’s being done about it in the UK.

Main Points

  • Health risks are serious
    Living in damp or mouldy homes increases the risk of respiratory problems, particularly for people with existing lung disease like aspergillosis, asthma, COPD, or bronchiectasis.

  • Children and vulnerable adults
    Young children, older adults, and people with weakened immune systems are most affected. Damp and mould can trigger flare-ups, worsen breathing symptoms, and increase infection risk.

  • Mental health impact
    Poor housing is linked to stress, anxiety, and depression. Worrying about your home can also worsen physical symptoms, especially if you avoid using rooms with mould or limit heating to save costs.

  • Cold homes add to the problem
    Cold airways can make breathing more difficult, weaken the immune system, and increase the chance of winter infections.

  • Wider health effects
    Damp and cold can also affect heart health, bone/joint pain, and overall wellbeing.

What’s Being Done

  • Legal responsibilities: Landlords must keep homes safe and fit to live in under UK law. This includes dealing with serious damp and mould.

  • Government programmes:

    • Funding for improving insulation and heating in social housing.

    • Advice services for tenants.

    • Local councils can take action if landlords fail to address hazards.

  • Public health guidance now recognises the link between housing and chronic illness, with stronger advice for early intervention.

What This Means for Aspergillosis Patients

  • Stay alert to symptoms: If your cough, breathlessness, or fatigue worsen at home, check for damp, mould, or poor heating.

  • Act early: Report problems to your landlord or council quickly—prolonged exposure can worsen lung damage.

  • Medical link is recognised: You are more likely to be taken seriously now, as official guidance acknowledges the health risks.

  • Keep records: Photos, symptom diaries, and GP notes can support housing complaints.

For full details see https://commonslibrary.parliament.uk/research-briefings/cdp-2025-0096/

by GAtherton

Spoon Theory: Making Sense of Energy Limits in Aspergillosis

The Spoon Theory is a way of explaining what it’s like to live with a long-term illness that affects your energy and stamina. It was first described by Christine Miserandino, who used spoons as a visual metaphor for the limited amount of energy she had each day.

How it works

  • Imagine you start each day with a set number of spoons — maybe 10 or 12.

  • Every task you do “costs” spoons:

    • Getting dressed might cost 1 spoon

    • Cooking a meal might cost 2 spoons

    • A shower could cost 2 spoons on a bad day

    • Going for a walk or attending an appointment might cost 3 or 4 spoons

  • When you run out of spoons, that’s it — you don’t have the energy to keep going. If you push yourself, you “borrow” from tomorrow’s spoons, which can leave you feeling worse for days.

Why CPA and ABPA drain your spoons

Both conditions can cause:

  • Breathlessness – even small tasks can feel like hard work.

  • Coughing and mucus production – which can be exhausting physically.

  • Flare-ups – like haemoptysis (coughing blood) in CPA or allergic inflammation in ABPA.

  • Medication side effects – antifungals, steroids, or biologics can also sap your energy.

  • Frequent appointments – travel and hospital visits can eat into your spoon supply.

Why Spoon Theory matters

Understanding Spoon Theory helps you:

  • Plan your day – save enough spoons for the important things.

  • Pace yourself – spread out demanding tasks, rest between them.

  • Explain your limits – it’s an easy way to help friends, family, and employers understand that you’re not being lazy — you’re managing your limited energy.

  • Avoid “boom and bust” – pushing too hard on a good day can leave you with no spoons for the next few days.

Practical tips

  • Prioritise – decide what’s essential today and what can wait.

  • Ask for help – let others “spend” their spoons for you when possible.

  • Rest without guilt – recharging is part of living with a long-term condition.

  • Track your spoons – keeping a symptom diary can help you notice patterns.

Remember: Your number of spoons can change day-to-day, especially if you’ve had a flare-up, infection, or a hospital stay. Learning to work with your spoons instead of against them can help you stay in control and reduce stress.

by GAtherton

Brensocatib for Aspergillosis Patients: A New Approach to Managing Bronchiectasis and Inflammation

Brensocatib is a promising investigational medication currently under evaluation for the treatment of non-cystic fibrosis bronchiectasis (NCFBE) and other neutrophil-driven diseases, including conditions related to Aspergillus infections like aspergillosis. This article explores how brensocatib may benefit patients with aspergillosis, particularly those dealing with bronchiectasis and other complications that arise from chronic Aspergillus infections.

Note that brensocatib is NOT a cure for bronchiectasis or aspergillosis.

What is Brensocatib?

Brensocatib is an oral Dipeptidyl Peptidase 1 (DPP-1) inhibitor, a new class of drugs that targets neutrophil serine proteases, which are enzymes involved in the inflammation and tissue damage seen in chronic respiratory diseases. By inhibiting DPP-1, brensocatib reduces the activation of these destructive enzymes, leading to less inflammation and potentially slowing disease progression.

In clinical trials, brensocatib has shown significant promise in reducing the frequency of pulmonary exacerbations and slowing the decline in lung function for patients with bronchiectasis. This makes it an intriguing treatment option for individuals with Aspergillus-related diseases like chronic pulmonary aspergillosis (CPA), allergic bronchopulmonary aspergillosis (ABPA), and other forms of aspergillosis.

How Brensocatib May Benefit Aspergillosis Patients

1. Impact on Bronchiectasis in Aspergillosis

For many aspergillosis patients, bronchiectasis—a condition characterized by the permanent dilation of the bronchi—is a significant complication. In ABPA and CPA, Aspergillus infection contributes to chronic inflammation in the lungs, which can lead to bronchial damage and bronchiectasis. This increases the risk of frequent exacerbations and lung function decline.

Brensocatib works by reducing neutrophil-driven inflammation in the lungs, which could help prevent further lung damage and progression of bronchiectasis. By reducing inflammation and improving airway function, brensocatib may offer significant benefits for aspergillosis patients with bronchiectasis or chronic lung damage from fungal infections.

2. Reducing Pulmonary Exacerbations

One of the key benefits of brensocatib is its ability to reduce exacerbations, which are common in both ABPA and CPA. These flare-ups can lead to increased inflammation, infection, and lung tissue damage, further complicating the disease. The ASPEN trial (Phase 3 study) demonstrated that brensocatib significantly reduced the annualized rate of pulmonary exacerbations in patients with non-cystic fibrosis bronchiectasis. This benefit may extend to patients with aspergillosis, as frequent exacerbations can worsen lung function and overall health.

3. Slowing the Decline in Lung Function

Brensocatib also helps slow the decline in lung function, which is crucial for aspergillosis patients whose lung health may already be compromised by the infection. In chronic pulmonary aspergillosis (CPA), lung function decline can be progressive and irreversible without effective management. By reducing inflammation and exacerbations, brensocatib may help stabilize lung function and improve long-term outcomes for these patients.

4. Managing Chronic Inflammation in ABPA and CPA

Both ABPA and CPA are characterized by chronic inflammation in the airways. Brensocatib targets the underlying cause of much of this inflammation—neutrophil serine proteases—by inhibiting their activation. This could help reduce the chronic inflammation that causes damage to the airways and makes symptoms like cough, wheezing, and mucus production worse. For patients with aspergillosis and related respiratory complications, controlling this inflammation is key to managing symptoms and improving quality of life.

Clinical Evidence Supporting Brensocatib

The ASPEN trial, which included patients with bronchiectasis, demonstrated that brensocatib not only reduced exacerbations but also slowed the progression of lung function decline, as measured by forced expiratory volume in one second (FEV₁). Patients on brensocatib had a higher proportion of exacerbation-free days and better overall lung function than those on a placebo.

Although this trial did not focus solely on aspergillosis, its positive results suggest that brensocatib could be a valuable option for managing the lung damage and inflammation caused by Aspergillus infections, particularly in patients who have developed bronchiectasis as a result of the infection.

Safety and Side Effects

Like any medication, brensocatib can have side effects. The most common side effects observed in clinical trials included:

  • Hyperkeratosis (thickening of the skin)

  • Periodontal issues (such as gum inflammation)

  • Headache

  • Cough

  • Nasopharyngitis (inflammation of the nasal passages)

These side effects were generally mild to moderate. As brensocatib is still being evaluated for regulatory approval, ongoing monitoring and further clinical studies will help clarify its long-term safety profile.

Regulatory Status

Brensocatib has received FDA Priority Review for the treatment of non-cystic fibrosis bronchiectasis, and a decision is expected by August 12, 2025. If approved, it could become the first FDA-approved treatment for bronchiectasis and the first DPP-1 inhibitor for neutrophil-driven diseases. In the UK, Insmed, the manufacturer of brensocatib, has submitted a marketing authorization application to the MHRA. Pending approval, brensocatib could be available to patients in the UK by late 2025 or early 2026.

Conclusion

For aspergillosis patients, particularly those with bronchiectasis and chronic inflammation, brensocatib represents an exciting new treatment option. By targeting neutrophil-driven inflammation, reducing exacerbations, and slowing the decline in lung function, brensocatib offers hope for managing the long-term complications of Aspergillus infections. While it is still undergoing regulatory review, the clinical evidence supporting its efficacy suggests that it could become a valuable addition to the treatment arsenal for patients with aspergillosis.

by GAtherton

Being Heard in Healthcare: Confidence, Communication, Gender Bias, and Your Rights

Living with aspergillosis or severe asthma often means frequent contact with healthcare professionals — GPs, hospital specialists, nurses, physiotherapists, pharmacists, and more. Most of these encounters are positive, but sometimes patients leave feeling they weren’t truly listened to. This can be frustrating, especially when symptoms are complex, variable, or invisible to others.

Why Some Patients Feel Unheard

Some patients report that their background, gender, education, or knowledge of their condition seems to affect how clinicians speak to them. If a clinician thinks you are “well informed,” they may change their approach — sometimes giving you more detail, but occasionally becoming defensive or dismissive.
This shouldn’t happen. Every patient deserves the same respect, attention, and clear explanations, regardless of their background or experience.

Occasionally, what feels like “healthcare ego” may actually come from other sources:

  • Time pressure in busy clinics

  • Stress or fatigue

  • Overconfidence in diagnostic skills

  • Unconscious bias about gender, age, or condition severity

The Role of Gender Bias

Research in the UK and internationally shows that gender can sometimes influence how symptoms are interpreted and how seriously they are taken. Women are, on average, more likely to have their symptoms attributed to stress or anxiety, while men may be assumed to under-report pain or discomfort.
In conditions like asthma and aspergillosis — where breathlessness, fatigue, and chest symptoms may not always show clearly on tests — this bias can delay diagnosis, affect treatment urgency, and shape how much explanation is given. Recognising that this bias exists can help you prepare to advocate for yourself more effectively, regardless of gender.

The Women’s Health Strategy for England — A Step Forward

The Women’s Health Strategy for England (gov.uk link) is a landmark initiative aiming to transform how healthcare listens to and serves women. It highlights priorities that matter for anyone with a long-term, complex condition:

  1. Women’s Voices Must Be Heard – 84% of women surveyed said they often felt ignored or dismissed by healthcare professionals.

  2. More Inclusive Policies and Training – Increased focus on women’s health education for healthcare staff and embedding shared decision-making into routine care.

  3. Closing the Research Gap – Improving female representation in clinical research and analysing data by sex and life stage.

  4. System-Level Change – Appointing a Women’s Health Ambassador, setting up women’s health hubs, and introducing women’s health leads for accountability.

For the aspergillosis community, this means a greater push for inclusive research, equal access to treatment, and recognition of symptoms that might otherwise be overlooked.

What to Do if You Feel You Weren’t Heard

If you leave an appointment feeling your concerns weren’t addressed:

  • Restate your main concern politely but firmly, explaining why it matters.

  • Ask the clinician to repeat back what they understood, so you can correct any misunderstandings.

  • Request that your concerns be recorded in your medical notes.

  • Follow up in writing via a patient portal, email, or letter.

  • Bring a trusted supporter (trusted friend, family member, or advocate) to future appointments to help make your case.

Building Confidence in Healthcare Conversations

Confidence in speaking up grows with preparation:

  • Prepare your top two or three key points before the appointment.

  • Practise saying them aloud so they feel natural.

  • Use clear phrases like “I am concerned about…” or “I need to understand…”

  • Remember — you have a right to clear information about your diagnosis, treatment, and risks.

  • If you can’t speak up in the moment, follow up in writing afterwards.

Why This Works — The Evidence

Research shows prepared, assertive patients get clearer, more thorough answers:

  • The “Ask Me 3” approach improves understanding and engagement.

  • Shared decision-making studies show prepared patients are more likely to have concerns addressed and remember what was discussed.

  • BMJ and Patient Education & Counseling studies find that specific, assertive language leads to better explanations and consideration of alternatives.

  • Having an advocate present improves follow-up and adherence to care plans.

Final Thought

In aspergillosis care, where symptoms can be complex and treatments long-term, good communication is as important as good medicine. Speaking up respectfully but confidently helps you get the care you need and supports a culture where every patient — regardless of gender or background — is listened to from the first moment. The Women’s Health Strategy shows there is now national recognition of these issues, and your voice is a vital part of making change happen.

by GAtherton

📘 What is CPA? (Chronic Pulmonary Aspergillosis)

Patient handout for A&E staff who are not aware of aspergillosis.

What is CPA?

CPA is a chronic fungal infection of the lungs caused by Aspergillus, most often in people who already have damaged lungs from conditions like tuberculosis, COPD, lung cancer, or sarcoidosis.

Unlike ABPA, CPA is a true infection, not an allergic reaction. It is not contagious but can slowly destroy lung tissue if not treated.

Symptoms

  • Chronic cough, often with mucus

  • Coughing up blood (haemoptysis)

  • Fatigue, low-grade fever

  • Unexplained weight loss

  • Breathlessness

  • Recurrent chest infections not responding to antibiotics

Diagnosis

  • CT scan of the chest showing cavities, nodules, or fungus balls (aspergillomas)

  • Aspergillus IgG antibody (usually raised)

  • Positive sputum PCR or culture for Aspergillus

  • Exclude TB and malignancy

Treatment

  • Long-term antifungal therapy (e.g. itraconazole, voriconazole, posaconazole)

  • Monitor blood levels and liver function

  • Surgery or embolisation if severe bleeding occurs

  • Supportive care: oxygen, nutrition, physiotherapy

Key Points for A&E:

✅ CPA is a progressive fungal infection, not a typical bacterial pneumonia
✅ May present with haemoptysis, respiratory distress, or systemic illness
✅ Review current antifungal treatment and potential drug interactions
✅ Consider urgent chest CT and specialist referral if patient is unwell

📍 For specialist support:

National Aspergillosis Centre (NAC)
🏥 Wythenshawe Hospital, Manchester University NHS Foundation Trust
🌐 NAC homepage on MFT website  https://mft.nhs.uk/wythenshawe/services/infectious-diseases/national-aspergillosis-centre/
🌐 www.aspergillosis.org

📞 Daytime contact: 0161 291 2891 or 0161 291 4362
📞 Urgent out-of-hours: Call Wythenshawe switchboard on 0161 998 7070
📢 Ask for the on-call Infectious Diseases Consultant

by GAtherton