Voriconazole and Sun Sensitivity

People taking voriconazole need to be very cautious in the sun because this antifungal can cause photosensitivity reactions—meaning the skin becomes more sensitive to sunlight, even through glass or on cloudy days. This can lead to severe sunburn, skin blistering, and long-term damage, including premalignant and malignant skin changes (like squamous cell carcinoma), especially with prolonged use.

Here’s what people on voriconazole should do to protect themselves:

☀️ Sun Safety Tips for Voriconazole Users

  1. Avoid direct and reflected sunlight:

    • Try to stay indoors between 10 a.m. and 4 p.m., when UV rays are strongest.

    • Choose shaded routes or walk on the shady side of the street.

    • Avoid indirect or reflected sunlight (e.g. off windows, water, sand, snow)

  2. Wear protective clothing:

    • Long-sleeved tops, trousers, and wide-brimmed hats are essential.

    • Consider UV-protective clothing (many brands offer this specifically).

    • Use UV-protective sunglasses to shield your eyes.

  3. Use high-factor sunscreen:

    • Broad-spectrum SPF 50+ sunscreen is best.

    • Apply generously to all exposed skin, including hands, ears, and neck.

    • Reapply every 2 hours, and after sweating or washing.

  4. Avoid sunbeds and tanning lamps:

    • Artificial UV exposure can also cause damage.

  5. Check windows:

    • UV-A rays can penetrate glass, so use UV-filtering films on car and home windows if needed.

  6. Regular skin checks:

    • Long-term voriconazole use has been linked to skin cancer, especially in immunocompromised individuals.

    • See a dermatologist regularly, and report any new or changing skin lesions.

⚠️ Signs of Photosensitivity to Watch For:

  • Red, itchy, or painful rash in sun-exposed areas

  • Skin blistering or peeling

  • New moles or spots, or changes to existing ones

If you're on long-term voriconazole and sun exposure is unavoidable, it might be worth discussing alternative antifungal treatments with your doctor, especially if skin damage begins to occur.

Here’s a mix of recommended sunscreens and UV-protective gear that people on voriconazole (especially those with prolonged use or immunosuppression) often find effective. These are high-protection, broad-spectrum, and suitable for sensitive or compromised skin.

🧴 Top Sunscreens for Voriconazole Users

🇬🇧 Available in the UK

  1. La Roche-Posay Anthelios UVMune 400 Invisible Fluid SPF 50+

    • Extremely high UVA/UVB protection.

    • Lightweight, non-greasy, great for sensitive skin.

    • Popular among transplant and cancer patients for sun protection.

  2. Altruist Dermatologist Sunscreen SPF 50/50+

    • Developed by a UK dermatologist.

    • Broad-spectrum, affordable, fragrance-free.

    • Available in bulk (good for daily use on large areas).

  3. Ultrasun Extreme SPF 50+

    • Long-lasting protection, water-resistant.

    • Ideal for extreme sun sensitivity.

    • One application can last several hours if you’re not sweating heavily.

  4. Eucerin Sun Fluid Pigment Control SPF 50+

    • High UVA/UVB and HEVIS (visible light) protection.

    • Helps prevent hyperpigmentation from sun damage.

  5. Heliocare 360° Mineral Tolerance Fluid SPF 50+

    • 100% mineral filters (ideal for highly sensitive or reactive skin).

    • Broad-spectrum including infrared and visible light.

    • Often recommended by dermatologists for patients with photosensitive conditions.

👕 UV-Protective Clothing

Look for clothes labelled UPF 50+ (Ultraviolet Protection Factor), which blocks 98% of UV rays. Here are some trusted brands:

🇬🇧 Available in the UK or for international shipping:

  1. Solbari (Australia/UK)

    • Offers UPF 50+ certified clothing, including hats, long-sleeve tops, trousers, and gloves.

    • Specifically designed for people with photosensitivity and skin cancer risks.

  2. Coolibar (US-based, ships to UK)

    • One of the gold-standard brands for UV-protective clothing.

    • Comfortable, stylish, and medically recommended for sun-sensitive conditions.

  3. Uniqlo Airism Long Sleeve Tops

    • While not marketed as UV-protective, many of their Airism or UV-cut ranges have built-in UV filters.

    • Great for layering or casual use.

  4. Decathlon UV Protection Range

    • Affordable UPF clothing, especially good for outdoor walking and travel.

    • Includes UV-protective hats, neck gaiters, and swimwear.

🕶️ UV-Protective Sunglasses

Make sure they:

  • Are labelled UV400 or 100% UVA & UVB protection

  • Preferably have wraparound lenses to protect the sides

  • Brands: Ray-Ban, Oakley, M&S UV-protection glasses, or Fitovers if you already wear prescription glasses.

by GAtherton

What are all the diseases that link to higher risk of aspergillosis?

This is a big but very important question, especially for understanding who’s at higher risk of aspergillosis — including invasive aspergillosis (IA), chronic pulmonary aspergillosis (CPA), allergic bronchopulmonary aspergillosis (ABPA), and aspergilloma.

Here's a breakdown of the diseases and conditions linked to higher risk of aspergillosis, categorized by underlying mechanism:

🧬 1. Immunosuppression-Related Conditions

These are major risk factors for invasive aspergillosis:

  • Hematologic malignancies (e.g., leukemia, lymphoma, multiple myeloma)

  • Hematopoietic stem cell transplantation (HSCT)

  • Solid organ transplantation (especially lung, liver, heart)

  • Prolonged neutropenia (e.g. after chemotherapy)

  • Chronic granulomatous disease (CGD)

  • Severe aplastic anemia

  • Primary immunodeficiencies (e.g., CARD9 deficiency)

  • AIDS (late-stage, esp. with neutropenia or co-infections)

🫁 2. Pre-existing Lung Disease

Especially relevant to chronic pulmonary aspergillosis (CPA), aspergilloma, and ABPA:

  • Tuberculosis (TB) – especially cavitary or healed TB

  • Non-tuberculous mycobacterial (NTM) infection

  • Chronic obstructive pulmonary disease (COPD)

  • Asthma (moderate-severe or steroid-dependent)

  • Cystic fibrosis (CF)

  • Bronchiectasis (including post-infectious or idiopathic)

  • Sarcoidosis (esp. fibrocavitary)

  • Pneumoconiosis (e.g. silicosis)

  • Old healed fungal infections (e.g., histoplasmosis)

  • Post-COVID lung damage (e.g., fibrosis or cavitation)

💊 3. Medication or Treatment-Induced Immunosuppression

  • High-dose corticosteroids (especially prolonged use)

  • TNF-alpha inhibitors (e.g., infliximab, etanercept)

  • Calcineurin inhibitors (e.g., cyclosporine, tacrolimus)

  • Chemotherapy

  • JAK inhibitors (e.g., tofacitinib, ruxolitinib)

  • Anti-IL-5, IL-4, IL-13 monoclonal antibodies (possible ABPA risk modifiers)

🧠 4. ICU or Hospital-Acquired Risk

  • Severe COVID-19 pneumonia (→ COVID-associated pulmonary aspergillosis, CAPA)

  • Severe influenza (→ Influenza-associated pulmonary aspergillosis, IAPA)

  • ARDS (acute respiratory distress syndrome)

  • Mechanical ventilation

  • Broad-spectrum antibiotics

  • Renal replacement therapy / dialysis

🧬 5. Genetic/Allergic Conditions

  • Atopy (strong personal or family history)

  • Allergic bronchopulmonary aspergillosis (ABPA) risk is higher in:

    • Asthma

    • Cystic fibrosis

  • HLA associations (e.g. HLA-DR2, DR5 in ABPA)

🦠 6. Other Conditions with Fungal Susceptibility

  • Diabetes mellitus (especially poorly controlled)

  • Liver cirrhosis (linked to immune dysregulation)

  • Chronic kidney disease (esp. end-stage and dialysis patients)

  • Malnutrition or cachexia

  • Post-surgical states (e.g. after lung surgery, esp. with bronchopleural fistula)

🕊️ Reassurance for Patients: Understanding Aspergillosis Risk

If you’ve been told you’re at higher risk of aspergillosis, it’s completely natural to feel concerned. But it’s important to know that risk doesn’t mean certainty — and that many people live full, healthy lives even with underlying conditions linked to this infection.

Here are a few key points to help you feel more at ease:

🌿 1. Risk Isn’t the Same as Diagnosis

Being “at risk” means doctors will keep a closer watch for early signs — not that you will get the infection. Many people with risk factors never develop aspergillosis at all.

🛡️ 2. Monitoring & Prevention Are Powerful

Your healthcare team is trained to spot the earliest signs of infection, and tools like chest scans, blood tests, and symptom checks mean infections can often be detected early — when they’re most treatable.

💊 3. Treatments Are Effective and Improving

From antifungal medications to inhaled therapies and new biologic drugs, we have more tools than ever to manage all forms of aspergillosis — often with minimal impact on day-to-day life.

🧠 4. You’re Not Alone

Millions of people around the world live with asthma, COPD, or other chronic conditions. Support groups, clinics, and community resources are there to help you feel supported and empowered.

🌞 5. Focus on What You Can Control

Healthy lifestyle choices, regular medical checkups, avoiding dusty environments, and good hygiene all reduce your chances of exposure. You have real power to protect your health.

❤️ In Short:

Risk awareness is a tool for empowerment — not a cause for fear.
With vigilance, care, and support, most people do very well.

Full list:

[pdf-embedder url="https://aspergillosis.org/wp-content/uploads/2025/04/Aspergillosis_Risk_Factors.pdf"]

We can estimate the level of the increased risk in many cases - ie. by how much is the risk of getting aspergillosis increased over people who do not have the named risk factor?

[pdf-embedder url="https://aspergillosis.org/wp-content/uploads/2025/04/Quantified_Aspergillosis_Risk_With_Multipliers.pdf"]

by GAtherton

Taking itraconazole for the first time?

✅ Checklist for Taking Itraconazole the First Time

💊 1. Know Your Form: Capsule vs Liquid

  • Capsules:

    • Must be taken with a full meal (ideally high-fat) to help absorption

    • Avoid taking with antacids, PPIs, or H2 blockers (like omeprazole, ranitidine)

  • Liquid (solution):

    • Must be taken on an empty stomach

    • Better absorption than capsules—but tastes unpleasant to some

👉 Make sure you know which form you're on and follow the correct instructions. If unsure, ask your pharmacist.

🕒 2. Stick to a Routine

  • Take it at the same time every day

  • Don’t skip doses

  • If you miss one and it's within a few hours—take it. If it’s close to the next dose, skip it—don’t double up.

🥗 3. Food and Drug Interactions

  • Avoid grapefruit juice – it can increase side effects

  • Avoid alcohol – adds to liver strain

  • Tell your doctor/pharmacist if you take:

    • Statins

    • Calcium channel blockers

    • Steroids

    • Blood thinners (e.g., warfarin)

    • Drugs that reduce stomach acid

🩺 4. Baseline & Follow-Up Tests

  • Before or soon after starting, you should have:

    • Liver function tests (LFTs)

    • Kidney function tests

    • Itraconazole blood levels (usually after 1–2 weeks if long-term treatment)

    • ECG if there's any heart history (due to rare risk of heart problems)

✅ Ask your doctor to schedule a check-up in 2–4 weeks to make sure the drug level is therapeutic and safe.

📋 5. Watch for Side Effects

Common but usually mild:

  • Nausea

  • Diarrhea

  • Headache

  • Rash

More serious (call your doctor if these occur):

  • Upper right abdominal pain, yellowing of the eyes/skin (⚠️ possible liver injury)

  • Shortness of breath, ankle swelling (⚠️ possible heart effects)

  • Tingling or numbness (⚠️ rare nerve effects)

  • Fatigue, dizziness, or mood changes

💡 6. Stay Hydrated and Track Symptoms

  • Keep a daily symptom diary (breathlessness, fatigue, cough, rash, mood, etc.)

  • Stay hydrated, eat well, and let your team know if anything feels “off”

💬 Want a Tip?

You can ask for a medication review a couple weeks after starting—especially if you're on other long-term meds. That’s often when interactions or early side effects show up.

Keep your prescribing doctor informed of any new symptoms, and don't forget your pharmacist is a great source of good advice about any drug you are taking and how they may interact with each other.

by GAtherton

What drugs are being developed to reduce steroid intake

New drugs and strategies are being developed or repurposed to reduce or even eliminate the need for steroids in diseases like ABPA, where inflammation is driven by an allergic immune response to Aspergillus.

Here’s a breakdown of what’s already available and what’s on the horizon:

🧬 Biologics – the biggest game-changer

These are antibody-based therapies that target specific immune pathways, rather than suppressing the whole immune system like steroids do.

✅ Already used off-label or in trials for ABPA:

1. Omalizumab (Xolair)

  • Targets IgE (the allergy antibody that’s sky-high in ABPA)

  • Already licensed for severe allergic asthma

  • Studies show it reduces exacerbations, improves lung function, and helps taper off steroids

  • Limitations: expensive, dosing based on IgE levels and weight (difficult in patients with very high IgE)

2. Mepolizumab (Nucala)

  • Targets IL-5, which drives eosinophil activity

  • Approved for eosinophilic asthma

  • Used in some ABPA patients, especially when eosinophils remain high

  • Can help reduce steroid use and fungal exacerbations

3. Benralizumab (Fasenra)

  • Also targets IL-5 receptor – causes direct depletion of eosinophils

  • Similar benefits to mepolizumab but may act faster

  • Small studies and case reports show promise in ABPA and chronic pulmonary aspergillosis with eosinophilia

4. Dupilumab (Dupixent)

  • Blocks IL-4 and IL-13, key drivers of Th2 inflammation

  • Approved for asthma, atopic dermatitis, and nasal polyps

  • Early evidence suggests it may benefit ABPA patients, especially those with co-existing nasal polyps or eczema

  • Could be ideal for steroid-sparing in allergic fungal disease

💊 Antifungals as steroid-sparing agents

Already in use, but still being optimized:

  • Itraconazole

  • Voriconazole

  • Posaconazole

  • Isavuconazole (being explored more recently, better tolerated in some patients)

These reduce fungal burden, which helps turn down the immune overreaction—letting steroids be tapered or even avoided in some patients.

🔬 In Development or Under Investigation

🧪 Tezepelumab

  • Blocks TSLP (thymic stromal lymphopoietin) – an early signal in allergic inflammation

  • In trials for severe asthma

  • May be helpful in ABPA down the line – trials are ongoing

🧪 Anti-IL-33 and Anti-ST2 therapies

  • IL-33 is another "alarmin" involved in allergic responses

  • Still in early stages, but being watched closely for steroid-sparing potential in allergic lung diseases

🌍 Other Strategies Being Studied

  • Inhaled antifungals (e.g., inhaled voriconazole or amphotericin B) – may reduce systemic side effects

  • Vaccines against Aspergillus – still early stage

  • Mucolytics and anti-inflammatory antibiotics (e.g., azithromycin) as steroid-sparing support in some patients

🤔 What You Can Do Now

  • If you’re struggling with steroid side effects or dependency, it’s totally reasonable to ask your respiratory team:

    • “Am I a candidate for a biologic like omalizumab or mepolizumab?”

    • “Is my antifungal therapy optimized?”

    • “Would a switch to inhaled or combination therapy help reduce my steroid use?”

by GAtherton

🌙 How to Manage Insomnia (Gently and Practically)

🧠 1. Understand the Type

Not all insomnia is the same — and understanding the pattern helps guide what to try.

  • Sleep-onset insomnia = can’t fall asleep

  • Sleep maintenance insomnia = wake up often or too early

  • Mixed = both

This affects what works — e.g., sleep-onset responds well to wind-down rituals, while maintenance might need different support.

🕯️ 2. Evening Wind-Down (Not Just “No Screens”)

Forget rigid rules — the key is sending cues to your nervous system that it’s safe to rest.

✅ Try:

  • Warm drink (caffeine-free herbal tea, warm milk)

  • Warm bath or shower

  • Dim lights, soft music, reading something gentle

  • A short evening walk (light exposure helps your body clock)

❌ Avoid:

  • Stressful news

  • Heavy exercise right before bed

  • Working or arguing in the bedroom

⏰ 3. Rethink the Clock

Insomnia often creates performance anxiety: “I must sleep now.” This makes things worse.

💡 Try:

  • Cover the clock or put it out of view

  • Get out of bed if you're awake >20–30 mins, and do something boring or calming (puzzle, stretching, audiobook)

  • Go back to bed only when sleepy

📆 4. Consistency is King

Even if you sleep badly, try to:

  • Wake up at the same time every day

  • Don’t “make up” for poor sleep with long naps or sleeping in — it confuses your body clock

This retrains your circadian rhythm.

🧘‍♀️ 5. Calm the Mind (Not Force Sleep)

Racing thoughts? Try:

  • Box breathing or 4-7-8 breathing

  • Body scan meditation (many free ones on YouTube or Calm app)

  • Journaling before bed to “park” worries

  • CBT for Insomnia (CBT-I) — best evidence-based therapy

Apps like Sleepio, Pzizz, Insight Timer, or Headspace have helpful guided sessions.

🌿 6. Gentle Natural Aids

These aren’t cures, but they can help some people feel drowsier:

  • Magnesium glycinate

  • Valerian root, passionflower, ashwagandha

  • Melatonin (best for circadian issues like shift work or jet lag — less effective for general insomnia)

Always check for interactions, especially with other meds.

🗣️ 7. When to Get Help

See a GP or sleep specialist if:

  • It’s lasting more than 3 months

  • It’s impacting daily functioning or mood

  • You have signs of sleep apnea, restless legs, or depression/anxiety

They can guide you through structured therapy or rule out hidden causes.

by GAtherton

Swimming for people with aspergillosis

How could you advise someone with aspergillosis who wants to swim but finds the local pool triggers their asthma?

Great question — and can be really important for quality of life. For someone with aspergillosis (especially ABPA or CPA) and asthma that worsens in chlorinated pools, here’s a tailored guide that balances safety with enjoyment:

🏊‍♀️ Swimming with Aspergillosis + Chlorine Sensitivity: A Practical Guide

💡 1. Choose the Right Pool Environment

Goal: Minimise chloramine exposure (which irritates airways).

✅ Best options:

  • Ozone- or UV-treated pools: These significantly reduce chloramine levels.

  • Saltwater pools: Gentler, although still chlorinated (just less harsh).

  • Natural pools or lidos: Often free from chlorine, especially in outdoor settings.

  • Seawater swimming: The ultimate in chlorine-free options if you're near the coast and it's safe.

🚫 Avoid:

  • Indoor pools with poor ventilation

  • Pools that "smell strongly of chlorine" — this usually means high chloramines

🕗 2. Swim at Low-Traffic Times

  • Early morning swims are ideal — before other swimmers add organic matter (sweat, sunscreen, etc.), which reacts with chlorine to form irritants.

  • Ask the pool when they clean/shock it — swimming after that is usually better.

🧤 3. Protect Your Airways

  • Use a nose clip to avoid inhaling water vapor directly through the nasal passages.

  • Consider wearing a light face mask (e.g., FFP2) on the poolside until just before entering, to avoid breathing chloramines in enclosed spaces.

  • Ventolin (salbutamol) or another rescue inhaler should always be close by — even poolside if staff are aware.

💊 4. Pre-medicate if Needed

With your doctor’s advice, consider:

  • Short-acting bronchodilator 15–30 mins before swimming (e.g., salbutamol)

  • Leukotriene receptor antagonists (like montelukast) for added airway protection

  • Nasal rinses or corticosteroid sprays post-swim if you’re prone to sinus issues

🚿 5. Shower Immediately After

To reduce any skin or airway irritation:

  • Warm shower straight after

  • Nasal rinse or saline spray

  • Clean/dry clothes quickly to avoid damp mold exposure

🏞️ 6. Explore Alternative Swimming Options

  • Outdoor pools or lidos

  • Swimming lakes or sea-based pools (like Bude Sea Pool)

  • Private or spa pools with alternative sanitisation systems

  • Aquatherapy centres: Often use lower chemical levels and may cater to sensitive lungs

💬 7. Talk to Pool Staff

Many pools are willing to help. Try:

“I have a medical lung condition that reacts to chloramines — can you tell me when chlorination is lowest or if you use UV systems?”

You might be surprised how supportive they are.

by GAtherton

Help Us Explore a New Treatment for Chronic Pulmonary Aspergillosis (CPA)

We’re Recruiting for a Clinical Trial of Interferon-Gamma (IFNγ)

We’re looking for people with chronic pulmonary aspergillosis (CPA) to take part in an exciting clinical trial testing a new treatment approach using interferon-gamma (IFNγ) — a substance that could help the immune system fight the Aspergillus infection more effectively.

What is CPA?

CPA is a long-term lung infection caused by the fungus Aspergillus. It usually affects people with chronic lung diseases like COPD or those who’ve had tuberculosis (TB) in the past. Over time, CPA can cause:

  • Enlarging cavities in the lungs

  • Recurrent chest infections

  • Persistent coughing and fatigue

  • Worsening breathlessness and reduced quality of life

It’s a progressive condition and can be hard to diagnose early. Around 3,600 people are living with CPA in the UK. Without effective treatment, CPA can be life-limiting — up to 4 in 10 people may die within five years of diagnosis.

Current Treatment Challenges

Treatment typically involves long-term antifungal medication, but:

  • Only about 60% of patients improve

  • Treatment can be lifelong, with relapses common

  • There is only one class of oral antifungals available

  • Side effects and high costs are frequent problems

This is why we urgently need better treatment options.

Why Interferon-Gamma?

Our research suggests that many CPA patients may have a weakened immune response, particularly a lower production of interferon-gamma (IFNγ) — a natural substance that helps the body fight fungal infections like Aspergillus.

In small studies, giving IFNγ to patients who didn’t respond to antifungals showed fewer lung flares, fewer hospital stays, and better quality of life. It’s already used safely in other NHS treatments — now we want to explore its role in CPA.

What This Trial Involves

We’re running a randomised clinical trial to test IFNγ in CPA. Here’s what to expect:

  • You must be starting antifungal treatment for CPA

  • You’ll be randomly placed in one of two groups:

    • One group receives IFNγ + antifungals for 12 weeks

    • The other group receives antifungals only

  • We’ll monitor:

    • Changes in lung CT scans

    • Quality-of-life scores

    • Any side effects or problems with tolerability

The trial will include 50 participants in total (25 in each group) and is expected to run until August 2026.

Why Your Participation Matters

By joining this study, you’ll help us find out whether IFNγ could:

  • Improve treatment outcomes

  • Shorten the duration of therapy

  • Prevent relapses

  • Potentially benefit others with chronic lung diseases

If successful, this could lead to a larger trial and possibly a new standard treatment for CPA.

Interested in Taking Part?

You may be eligible if you:

  • Have been diagnosed with CPA

  • Are about to start antifungal treatment

  • Are willing to attend follow-up appointments for 12 weeks

👉 Click here for full details and how to take part

by GAtherton

Steroid-induced insomnia

Steroid-induced insomnia is a common and frustrating side effect of corticosteroid medications like prednisolone, dexamethasone, or hydrocortisone — especially when taken for conditions like aspergillosis, adrenal insufficiency, or inflammatory diseases.

🧠 Why it Happens

Corticosteroids affect the brain’s sleep-wake cycle and increase levels of cortisol-like hormones, which can make you feel:

  • Wired or overstimulated

  • Restless or anxious

  • Unable to fall asleep or stay asleep

Even low-to-moderate doses can affect sensitive sleepers, especially when taken in the afternoon or evening.

🕒 Tips to Manage It

1. Take Steroids in the Morning (if possible - discuss with your doctor)

Mimics the body’s natural cortisol rhythm and reduces sleep disruption.

2. Create a Wind-Down Routine

Try calming activities in the evening — reading, gentle music, warm bath, breathing exercises.

3. Avoid Stimulants After 2 PM

That includes caffeine, nicotine, and even long naps.

4. Sleep Hygiene Helps

  • Keep your room cool and dark

  • Avoid screens at least an hour before bed

  • Stick to a regular sleep schedule

5. Melatonin (with caution)

Some doctors may suggest melatonin to reset sleep patterns — but always ask first, especially if you're on multiple meds.

💊 Medical Support

If insomnia is severe or long-lasting:

  • Your doctor might adjust your steroid dose or timing

  • A short course of sleep aids may be prescribed if needed

  • Sometimes adding a mood stabilizer or sedating medication at night (like mirtazapine or a low-dose antihistamine) is helpful

by GAtherton

Managing the stress of having a chronic disease, could it even be PTSD?

What is the best way for a patient to manage the stress of having a chronic disease, worrying about lung bleeds – even PTSD?
That’s such an important and very human question. Living with a chronic disease—especially one that involves the lungs, like ABPA or CPA, and the looming fear of lung bleeds or hemoptysis—can be deeply traumatic. For many people, the psychological toll becomes as heavy as the physical one.

Let’s look at some of the best ways patients can manage chronic illness-related stress, especially when it edges into PTSD territory:

🧠 1. Acknowledge It’s Trauma

  • First: you’re not overreacting. Living with the constant threat of something like a lung bleed is traumatic.

  • Repeated hospital visits, coughing up blood, uncertainty—it can leave a person hypervigilant, anxious, and emotionally worn out.

🗣️ 2. Trauma-Informed Therapy

  • PTSD-like symptoms (flashbacks, panic, avoidance) can respond really well to therapies like:

    • CBT (Cognitive Behavioural Therapy)

    • EMDR (Eye Movement Desensitisation and Reprocessing) – especially useful for medical trauma

    • ACT (Acceptance & Commitment Therapy) – often used in chronic illness

  • Ask for a therapist familiar with chronic illness or health-related trauma.

🧾 You can usually request a referral from your GP, or seek out private therapy if accessible.

🧘 3. Mind-Body Practices

Some proven stress-reducing tools:

  • Breathwork (even just gentle box breathing: in 4s, hold 4s, out 4s, hold 4s)

  • Mindfulness (not just meditation, but moment-by-moment grounding)

  • Yoga or tai chi (adapted for lung health if needed)

  • Trauma-informed movement: gentle, non-triggering physical activity can help discharge stress.

💬 4. Peer Support (Online or In Person)

  • Talking to people who get it can massively reduce isolation.

  • Look for groups for:

    • Chronic lung disease / aspergillosis

    • Rare disease communities

    • Health anxiety or chronic illness PTSD

🌐 Aspergillosis Trust and NTM Patient Care UK sometimes link patients to support forums.

📖 5. Create a Health Toolkit or “Plan”

One big part of PTSD is the loss of control. Building a personal toolkit helps:

  • Written action plan for what to do during a flare or bleed (with your doctor)

  • Keep emergency contacts + hospital info handy

  • Have a “go bag” ready if hospital visits are frequent

  • Set up a small win routine (e.g., meds, hydration, small walk, rest)

💊 6. Medication Support (If Needed)

  • If panic, anxiety, or intrusive thoughts are severe, short-term or long-term medication can help.

  • SSRIs, low-dose beta blockers for panic symptoms, or sleep support may be part of care.

  • Work with a GP or psychiatrist who understands both mental health and chronic disease.

🧡 7. Give Yourself Credit and Kindness

This is hard. You’re surviving a reality most people can’t imagine. The fear is real. The strength it takes to keep going with all that fear is real too.

If you’d like, I can help you draft a personal “resilience plan” based on your needs—something tangible to refer to when you’re overwhelmed.

Let’s create a Personal Resilience Plan tailored to someone living with a chronic lung condition (like ABPA or CPA), with anxiety around lung bleeds and possible PTSD-like stress. This plan is meant to help you feel more grounded, supported, and in control, even when things feel overwhelming.

🛡️ Your Personal Resilience Plan

For Managing Chronic Illness, Lung Bleed Anxiety, and PTSD-Related Stress

🧭 1. Grounding Statement (Your “North Star”)

“I live with a serious condition, but I am not alone. I have tools, people, and plans that help me stay steady, even in scary moments.”

Use this when panic or flashbacks arise.

🧰 2. Emergency Action Plan

Having a clear plan for “what to do if…” takes the edge off the unknown.

✅ In case of a suspected lung bleed:

  • Stay calm, sit upright, lean slightly forward.

  • Call 999 (or your emergency contact) if bleeding is profuse or you feel faint.

  • Notify hospital/clinic (add number here: __________)

  • Use oxygen if prescribed. Avoid lying flat.

  • Bring your go bag with essentials (see below).

✅ Go Bag Checklist:

  • Hospital letters

  • Medication list

  • Emergency contact numbers

  • Water, charger, snacks, headphones

  • Comfort item (photo, small item that grounds you)

💬 3. People to Call/Text When You’re Struggling

Name Contact Role
GP / Specialist Nurse [Name] – [Number] Medical support
Friend or Family Member [Name] – [Number] Emotional support
Therapist / Mental Health Contact [Name] – [Number] Grounding and talking it through
Crisis Line 116 123 (Samaritans, 24/7 UK) Non-judgmental emotional support

🧠 4. PTSD & Anxiety Coping Tools

Choose 2–3 from each category that resonate with you:

🌬️ In-the-Moment Grounding Techniques:

  • Box breathing: In for 4, hold 4, out 4, hold 4

  • 5-4-3-2-1 grounding: Name 5 things you see, 4 you feel, 3 you hear, 2 you smell, 1 you taste

  • Hold a cold item (ice cube or chilled bottle) — physical sensation brings you back to the present

✍️ Ongoing Processing Tools:

  • Keep a “bad day journal” just to vent — no need for polish

  • Write letters to your past self (“You got through that.”) or future self (“Here’s what helps next time.”)

📱 Helpful Apps:

  • Insight Timer (free guided breathing + trauma-sensitive meditations)

  • MindShift CBT (helps reframe anxious thoughts)

  • PTSD Coach (developed by clinicians, good for triggers + tracking)

🧘 5. Daily Resilience Routine (Small Wins Only)

Design this with chronic illness in mind — flexible and compassionate:

  • 🌞 Wake up + check-in (1–10: how’s body/mind today?)

  • 💊 Meds + hydration

  • 👣 Gentle movement (walk to garden, stretch, or none if flaring)

  • 📓 1 thing I’m grateful for, 1 thing I’m proud of

  • 🌙 Wind-down: calm music, bath, story podcast

💡 6. Medical Empowerment

  • Keep a written copy of your diagnosis, meds, and hospital plan

  • Ask your doctor for a specific protocol for what to do if bleeding recurs

  • Track symptoms via app or paper log — this helps you feel seen and them spot patterns

🧑‍🤝‍🧑 7. Support Network

Consider joining:

For more general guidance, try NHS PTSD webpages

by GAtherton

HEPA filters & heat to reduce exposure to allergens

Patients with forms of aspergillosis like ABPA can be highly allergic to fungal and many other airborne allergens. For some, relief can be found by ensuring the levels of airborne allergens in the home are as low as possible—this means removing as much dust as possible and removing sources of dust in the home.

Fungal spore fragments can be extremely small so air filters and vacuum cleaners have to have HEPA-grade filtration systems in order to be effective. NB there are some air cleaning systems that do not use filtration as a means to remove particles, instead they use heat (see bottom of page).

For those that use HEPA filters it is important that the correct grade of HEPA filtration is provided:

HEPA (High-Efficiency Particulate Air) filters are classified into different grades based on their filtration efficiency. The most commonly used classification is from ISO 29463 (based on EN 1822-1), which divides HEPA filters into E (Efficiency), H (High Efficiency), and U (Ultra-Low Penetration Air - ULPA) categories.

HEPA Filter Grades and Their Uses

Filter Class Efficiency (MPPS - Most Penetrating Particle Size, ~0.1-0.3 μm) Common Applications
E10 ≥ 85% Pre-filters in air purification systems
E11 ≥ 95% Air conditioning systems, HVAC filters
E12 ≥ 99.5% General air filtration, residential HEPA vacuum cleaners
H13 ≥ 99.95% Medical facilities, clean rooms, operating theaters
H14 ≥ 99.995% Pharmaceutical industry, laboratories, high-end medical applications
U15 ≥ 99.9995% Semiconductor manufacturing, critical research labs
U16 ≥ 99.99995% Nuclear and hazardous material containment
U17 ≥ 99.999995% Highly sensitive biological or radioactive environments

Key Uses of Different HEPA Grades

  1. E10-E12: Used in standard HVAC systems, air purifiers, and vacuum cleaners.
  2. H13-H14: Common in hospitals, clean rooms, and biosafety labs where high air purity is needed.
  3. U15-U17 (ULPA): Found in pharmaceutical manufacturing, semiconductor industries, and nuclear facilities.

For medical conditions like ABPA, HEPA H13 or H14 filters are recommended in home air purifiers and hospital settings to reduce airborne Aspergillus spores.

Heat-based filtration

Some domestic air purifiers use heat-based filtration to neutralize airborne contaminants. These typically work by heating air to a high temperature to kill bacteria, viruses, mould spores, and other pathogens before cooling them down and releasing them into the room.

Types of Heat-Based Air Cleaners

  1. Thermodynamic Sterilization (TSS) Air Purifiers

    • Uses a ceramic core heated to ~200°C (392°F) to destroy airborne microorganisms.
    • No filters, so there’s no need for replacements.
    • Example: Airfree air purifiers (popular in allergy-sensitive households).

  2. Hybrid Heat & Filtration Systems

    • Combines heat sterilization with HEPA filters or activated carbon.
    • Example: Some high-end medical-grade air purifiers integrate thermal disinfection.

Advantages

✔ Kills mold, bacteria, and viruses rather than just trapping them.
✔ No filter replacements (TSS models).
✔ Silent operation (as some don’t use fans).

Disadvantages

❌ Limited particle filtration—doesn’t remove dust, pet dander, or allergens like a HEPA filter does.
❌ Slower purification compared to fan-driven systems.

Best Use Cases

  • Allergy and asthma sufferers (e.g., ABPA) who want a maintenance-free solution.
  • People sensitive to mold and bacteria in humid environments.
  • Homes with immunocompromised individuals needing sterile air.

by GAtherton