Plugs and Slugs
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People who have aspergillosis tend to cough up characteristic mucoid plugs often when being given oral steroids. These can take many shapes and forms and be different colours depending on what they contain – some can have hard objects within them, others can be very thick/hard on general consistency.
These can be a helpful sign for a diagnosis, so we thought is would be useful if we collected a small library of images for clinicians to refer to, which we will publish here. Patients could also use them to show to your doctor as examples of the kind of thing they are also coughing up.
Images have helpfully been donated by members of the National Aspergillosis Support UK Facebook group.
Contact us if you have examples you would like us to include.
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Living with CPA and ABPA
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Gwynedd was formally diagnosed with CPA and ABPA at the National Aspergillosis Centre in 2012. Below she lists some of the symptoms she experiences and what she has found helpful in managing the conditions.
These symptoms fluctuate and can be very insignificant until a flare-up occurs. Then they can be severe enough to alter what I can do in a day.
- Tightening of the chest and or upper airway.
- Inflammation can be felt as heat and a 'zingyness' in my chest.
- Pain and discomfort over my back in my lungs.
Self-help
- A healthy diet, as recommended by the dietetic society or as guided by a consultant or specialist nurse.
- Extra protein where one is underweight.
- Exercise is essential for my mental well-being and helps me with chest clearing.
My local respiratory consultant firmly believes in the benefits of Yoga and slower breathing to help with chest clearance and relaxation, which reduces inflammation and anxiety and aids the immune system.
Anxiety is a side effect of ABPA & CPA as both conditions are debilitating, and fluctuations occur seemingly with no warning. It is not unreasonable to feel anxious about this diagnosis. Treatments help, as do lifestyle changes.
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Rare disease patient journey to diagnosis
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A map aspergillosis patients may be all too familiar with!
https://twitter.com/eurordis/status/1269906129364156416
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Talking to Friends and Family about Aspergillosis
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It can be hard to talk to friends and family about aspergillosis. As a rare disease, few people know about it, and some of the medical terms can be quite confusing. If you’ve been recently diagnosed, you might still be getting to grips with the disease for yourself, and learning about how it will affect your life. You might also run into preconceptions or assumptions about fungal disease that aren’t particularly helpful.
All in all, these are tricky waters to navigate, so here are some things to consider before talking to someone about aspergillosis for the first time.
- Get to grips with aspergillosis yourself first. Particularly if you’ve recently been diagnosed.
You might not ever know all the answers, but having an understanding of your type, your treatment and what aspergillosis means for you will help.
- Pick a good time and place. Being able to talk one-to-one, in a place where you won’t be interrupted, is a good first step.
It’s also a good idea to choose a time when neither of you will have to rush off. Pop the kettle on and settle in.
- Be patient. Your loved one or friend probably won’t have heard of aspergillosis before, and might struggle with the different medical words, so give them time to digest what you have told them and ask questions if they need to.
Try not to get frustrated if they don’t react in the way that you’d hoped. They might be very sad, when what you need right now is someone to be strong. Or they might brush it off or make light of it, when you want them to understand that aspergillosis is a serious disease. Often people need time to go away and think before coming back with offers of support, or with more questions – let them know that that’s ok.
- Be open and honest. Talking to someone you care for about the disease is not easy, but it’s important that you explain how aspergillosis is likely to affect you. You might feel tempted to downplay things, but being honest can help in managing your friend or family member’s expectations in the future.
Some people find the Spoon Theory helpful in explaining chronic illness. In short, spoons represent the energy needed to get daily tasks (getting dressed, showering, washing up etc.) done. People without chronic illness have an unlimited number of spoons each day. But people with a disease like aspergillosis only get, say, 10 spoons on a ‘good’ day. Using this example can help to explain how living with aspergillosis effects all areas of life.
- Let them in. If you are talking to someone close to you, inviting them to learn more or share some of your experiences can be very helpful. You might want to invite them to come to an appointment with you, or visit a local support meeting.
If they want to learn more, or ask questions you don’t know the answer to, useful resources are available online. For example, did you know that we have a Facebook group just for family, friends and carers of people with aspergillosis? Lots of pages on this website can also be very helpful, so feel free to pass on the link (https://aspergillosis.org/).
- Be yourself – you are not your disease. There is so much more to you than aspergillosis, and your friends and family should know that too. But talking about it could mean that you get a little bit more support or understanding from those closest to you, which is never a bad thing.
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Ear, Eye and Nail Aspergillus infections
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Ear, Eye and Nail Aspergillus infections
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Otomycosis
Onychomycosis
Fungal Keratitis
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Otomycosis
Otomycosis is a fungal infection of the ear, and the most frequently encountered fungal infection in ear, nose and throat clinics. The organisms responsible for otomycosis are usually fungi from the environment, most commonly Aspergillus niger. The fungi usually invade tissue that has already been damaged by bacterial infections, physical injury or excess earwax.
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Symptoms:
- Itching, irritation, discomfort or pain
- Small amounts of discharge
- A feeling of blockage in the ear
In rare cases, Aspergillus infecting the ear may spread to bone and cartilage, causing a severe and life-threatening disease. This is more frequently caused by Aspergillus fumigatus than Aspergillus niger, and is associated with underlying immunocompromisation, diabetes mellitus or patients on dialysis.
A diagnosis of otomycosis is confirmed by taking debris from the infected ear, culturing it on a special agar plate and using microscopy to establish the causative organism. If the infection is deep, a biopsy should be taken for fungal culture and identification. If there is a suspicion of the infection becoming invasive, CT and MRI scans can be used to see whether the fungi has spread to any other sites.
Treatment involves carefully drying and cleaning the ear canal, using microsuction. Aural syringing should be avoided as it can lead to the infection flaring up in deeper sites of the ear. Depending on how complicated the infection is, you may need to further treat with antifungals applied to the ear. Treatment should continue for 1-3 weeks and oral antifungal therapy is only required if the antifungals applied to the skin do not work, or the condition is invasive.
With good ear canal cleaning and antifungal therapy, otomycosis is usually cured and does not relapse.
Click here for more information on otomycosis
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Onychomycosis
Onychomycosis is a fungal infection of the nail, most commonly the toenail. Fungal nail infection is common in the general adult population, with a rate of about 5-25% and increasing incidence in elderly people. Onychomycosis makes up about 50% of all nail disease. There are a wide variety of fungi that can onychomycosis, but T. rubrum is responsible for about 80% of cases in the UK. Aspergillus species, amongst many other fungi, can occasionally cause onychomycosis. Some infections are caused by more than one fungus.
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Symptoms of the infection will vary depending on the type of fungus involved, but thickened nails and discoloration are common.
Some of the contributing factors causing this disease are occlusive footwear, extensive water contact with nails, repeated nail trauma, genetic predisposition and concurrent disease, such as diabetes, poor peripheral circulation and HIV infection, as well as other forms of immunosuppression.
Diagnosis of the causative fungus is achieved by scraping the nail (the material under the nail is the most rewarding material). Small pieces of this are then inspected under a microscope and grown on special agar plates to determine the species responsible for the disease.
Treatment depends on the causative species and the severity of the disease. Antifungal cream or ointment applied to the affected nail is effective in some milder cases. Oral antifungal therapy or surgery to remove the nail may be required. Treatment can last from 1 week to 12+ months, depending on the case. Cure is possible, but takes a long time, as the growth of nails is slow.
The nail fold can also become infected – this is called paronychia, and is usually caused by Candida albicans and other Candida species.
Click here for more information on onychomycosis
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Fungal Keratitis
Fungal keratitis is a fungal infection of the cornea. The most common causative agents are Aspergillus flavus, Aspergillus fumigatus, Fusarium spp. and Candida albicans, although other fungi can be responsible. Trauma, especially if associated with plant material, is a common antecedent to fungal keratitis. Contact lens fluid contaminated with fungi can also cause fungal keratitis. Other possible risk factors include topical corticosteroids, traditional medicines and higher external temperatures and humidity. Bacterial keratitis is more common in contact lens wearers and the western world, whereas in India and Nepal and some other countries, fungal keratitis is at least as common as bacterial keratitis. There are estimated to be over a million cases of fungal keratitis annually worldwide, mostly in tropical countries.
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ymptoms are usually like other types of keratitis, but perhaps more prolonged in duration (5-10 days):
- eye redness
- pain
- excess tears or other discharge from your eye
- difficulty opening your eyelid because of pain or irritation
- blurred vision
- decreased vision
- sensitivity to light
- a feeling that something is in your eye
The best way to diagnose fungal keratitis is to take a scraping of infective material from the cornea. Any fungal agent in this scraping is then grown on a special agar plate for identification. Along with culturing the organism, microscopy is required due to the wide variety of potential causative fungi.
Antifungals applied directly to the eye in the form of eye drops are essential for the treatment of fungal keratitis. The frequency at which they are administered depends on the severity of the infection. In severe cases this is hourly, and can be reduced in frequency after 1 day as improvement is documented. Topical antifungal therapy has a 60% response rate with retention of vision if keratitis is severe and a 75% response if milder. For severe infections, oral therapy is also advised. The antifungal treatment given depends on the causative species. Therapy is usually continued for at least 14 days. Surgical debridement is essential for severe disease.
Fungal keratitis is associated with a ~5- fold higher risk of subsequent perforation and need for a corneal transplant than bacterial keratitis. Recovery of sight is higher if the diagnosis is made early.
Click here for more information on fungal keratitis
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Training an immune system to recognise & help eliminate invasive aspergillosis
[et_pb_section fb_built="1" admin_label="section" _builder_version="4.16" global_colors_info="{}" theme_builder_area="post_content"][et_pb_row admin_label="row" _builder_version="4.16" background_size="initial" background_position="top_left" background_repeat="repeat" global_colors_info="{}" theme_builder_area="post_content" custom_margin="8px|auto|8px|auto|true|false"][et_pb_column type="4_4" _builder_version="4.16" custom_padding="|||" global_colors_info="{}" custom_padding__hover="|||" theme_builder_area="post_content"][et_pb_text admin_label="Text" _builder_version="4.16" background_size="initial" background_position="top_left" background_repeat="repeat" global_colors_info="{}" theme_builder_area="post_content"]Treating aspergillosis, in this case, acute invasive aspergillosis, with antifungal medication has its limitations. They tend to be quite toxic and have to be used carefully by experienced medical practitioners. When treating a severely immunocompromised person infected with Aspergillus (which is the main group of people that get the acute invasive form of this disease) mortality rates can exceed 50% in patient groups being treated for leukemia. It is easy to see that we need to develop better treatments and different treatment strategies.
A German research group at the University of Wurtzburg, led by Jurgan Loffler and Michael Hudacek has adopted a completely different approach to treating aspergillosis, instead of developing antifungal medication they have opted to 'train' the immune system of immunocompromised patients to recognise and attack the infection better in the hope that this will improve mortality.
This technology has been copied from cancer research, where we know that some cancers escape attack from the host's immune system and this allows cancer to grow. Researchers are successfully 'retraining' the host's immune system to attack the cancer cells more effectively.
The group took cells from a mouse's immune system (T-cells) that normally attack infecting microbes in order to eliminate infections and boosted their ability to find Aspergillus fumigatus, which is the main pathogen that causes aspergillosis. These cells were then given to mice infected with Aspergillus a mouse model system intended to simulate acute invasive aspergillosis in human patients.
The result was that of those mice that had invasive pulmonary aspergillosis and had no treatment, 33% remained alive whereas for those mice that were treated with the booster T-cells (CAR-T) 80% survived.
This result shows much promise for the treatment of aspergillosis. These experimental results need to be repeated in a human host but it is clear that this approach could form the basis for an entirely new way to treat aspergillosis, including the chronic forms of aspergillosis such as chronic pulmonary aspergillosis (CPA) and maybe even allergic bronchopulmonary aspergillosis (ABPA).
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ISHAM Award for Prof Malcolm Richardson
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Founded in 1954, the International Society for Human and Animal Mycology (ISHAM) is a large worldwide organisation that represents and supports all doctors and researchers that have an interest in Medical Mycology - which includes aspergillosis as well as all fungal disease.
Fungal diseases are generally not given the attention that they deserve from medical authorities so it is vital that diagnostics and research are supported internationally, especially where health services, so the work of ISHAM is particularly valuable.
The immense contribution of medical mycology diagnostics specialist and former Director of the Mycology Reference Centre Manchester Prof Malcolm Richardson to the work of ISHAM has been recognised at the recent ISHAM conference in New Delhi, September 2022.[/et_pb_text][/et_pb_column][/et_pb_row][/et_pb_section]
Mycology Reference Centre Manchester Director (retired) Prof Malcolm Richardson Honoured
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The British Society for Medical Myology (BSMM) has a long and distinguished history in the advancement of education and the promotion of research in all branches of medical and veterinary mycology over the last 69 years (www.bsmm.org), so it is a great honour to be elected to be its President. Prof Richardson follows an illustrious list of fellow medical mycologists who have served as President of BSMM since 1964.
Professor Malcolm Richardson built and ran the highly specialised mycology laboratories at the Mycology Reference Centre Manchester since its inception alongside the National Aspergillosis Centre at the Manchester University NHS FT in 2009 until his retirement in 2020, and still serves the centre as its Consultant Clinical Scientist in Medical Mycology. He has an extensive list of publications, positions and achievements - for more details click here.
Prof Richardson commented "I feel very honoured to be elected as President, having been a BSMM member for 50 years", and it is particularly fitting that the Presidency comes to Manchester as the annual scientific meeting of the BSMM is to take place in the city in May 2023.
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Why does someone with chronic disease feel so tired?
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Ashley explains how fatigue affects your psychological wellbeing, and how to manage thoughts and feelings.
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Most people with a chronic illness will be all too familiar with how tired it makes them feel. Fatigue is a prominent and debilitating symptom of aspergillosis and recent research is starting to show why this is.
We are often asked why someone with aspergillosis feels so tired and up till now our usual answer would be that when your immune system is working hard it tires you out much like if you had run a km or two that day – the effort needed is similar and you are exhausted. Recent research gives us a slightly different picture. As your body responds to an infection one of the things that your immune system can do is to directly put you to sleep to help your recovery!
Molecules called cytokines are produced in response to inflammation (eg infection) and one of their functions is to stimulate drowsiness and sleep. Furthermore once asleep your immune system really gets to work on the infection – focusing your energy on fighting the infection, and promoting fever.
We are aware that some medications make good sleep difficult/impossible at times and anxiety plays its part too. If you mention this to your GP you may get a referral to one of the many NHS Sleep clinics in the UK who can help problems with getting asleep/staying asleep https://www.nhs.uk/…/Sleep-Medicine/LocationSearch/1888
Hints and tips for getting a good sleep
Hints and tips on how to manage the psychological impact of fatigue
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Fungal Infection Trust
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If you receive support from the National Aspergillosis Centre and its resources please help FIT support us by donating.
FIT is a small UK charity run by volunteers that minimise costs so that over 95% of all donations go into its support of people who have aspergillosis.
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