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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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
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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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The importance of detecting cancer early
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Our focus at the National Aspergillosis Centre is to raise awareness and support those with aspergillosis. Still, it is vital as an NHS organisation that we raise awareness of other conditions because, sadly, a diagnosis of aspergillosis does not make you impervious to everything else, and a chronic illness has the potential to mask the symptoms of other conditions like cancer.
The ever-growing pressure on the NHS, increased waiting times, a growing reluctance amongst many to seek medical attention, and a lack of understanding of the common symptoms of many cancers are all factors that can lead to an extended diagnostic interval, which in turn reduces treatment options. Therefore, earlier recognition of symptoms by patients is crucial in mitigating other factors that delay diagnosis.
It is important to note that not all alarm symptoms are cancer. Still, cancer incidence and mortality projections estimate that 1 in 2 people in the UK will be diagnosed with cancer in their lifetime(1), so last week at our monthly patient meeting, we talked about cancer and the most common symptoms. Inspired by the incredible work of the late Dame Deborah James on raising awareness and breaking down the taboo attached to bowel cancer, we have compiled the content from that talk into one article.
What is Cancer?
Cancer starts in our cells.
Usually, we have just the right number of each type of cell. This is because cells produce signals to control how much and how often the cells divide.
If any of these signals are faulty or missing, cells might start to grow and multiply too much and form a lump called a tumour.
Cancer Research UK, 2022
Cancer Statistics
- Every two minutes, someone in the UK is diagnosed with cancer.
- Breast, prostate, lung and bowel cancers together accounted for over half (53%) of all new cancer cases in the UK in 2016-2018.
- Half (50%) of people diagnosed with cancer in England and Wales survive their disease for ten years or more (2010-11).
- Cancer is the cause of 27-28% of all deaths in England in a typical year.
Experts believe abdominal cancers - throat, stomach, bowel, pancreatic, ovarian - and urological cancers - prostate, kidney and bladder - are the most likely to go unrecognised.

The above chart shows cancer diagnoses by stage for some cancers in 2019 (the most current data). The stage of cancer relates to the size of the tumour and how far it has spread. Diagnosis at a later stage is related to lower survival.
Breast Cancer - Symptoms
- A lump or thickening in the breast which is different to the rest of the breast tissue
- Continuous breast pain in one part of the breast or armpit
- One breast becomes larger or lower/higher than the other breast
- Changes to the nipple - turning inward or changes shape or position
- Puckering or dimpling to the breast
- Swelling under the armpit or around the collarbone
- A rash on or around the nipple
- Discharge from one or both nipples
For more information visit:
https://www.breastcanceruk.org.uk/
https://www.cancerresearchuk.org/about-cancer/breast-cancer
Kidney Cancer - Symptoms
- Blood in the urine
- Low back pain on one side not through injury
- A lump on the side or lower back
- Fatigue
- Loss of appetite
- Unexplained weight loss
- Fever that is not caused by an infection and that doesn't go away
For more information visit:
https://www.nhs.uk/conditions/kidney-cancer/symptoms/
https://www.cancerresearchuk.org/about-cancer/kidney-cancer/symptoms
Lung cancer
The symptoms of lung cancer can be particularly hard to differentiate for patients with aspergillosis. It is important to report any new symptoms, such as a change to a long-term cough, weight loss and chest pain to your GP or specialist consultant.
Symptoms
- A persistent cough that doesn't go away after 2/3 weeks
- A change in your long-term cough
- Increased and persistent breathlessness
- Coughing up blood
- An ache or pain in the chest or shoulder
- Repeated or persistent chest infection
- Loss of appetite
- Fatigue
- Weight loss
- Hoarsness
For more information visit:
https://www.nhs.uk/conditions/lung-cancer
https://www.cancerresearchuk.org/about-cancer/lung-cancer
Ovarian Cancer - Symptoms
- Persistent bloating
- Feeling full quickly
- Loss of appetite
- Changes in bowel habits
- Unexplained weight loss
- Pelvic or abdominal pain
- Needing to wee more frequently
- Fatigue
For more information visit:
https://www.nhs.uk/conditions/ovarian-cancer/
Pancreatic Cancer
Some of the symptoms of pancreatic cancer can closely resemble those of bowel conditions such as irritable bowel. See your GP if your symptoms change, get worse, or do not feel normal for you.
Symptoms
- Yellowing to the whites of your eyes or skin (jaundice)
- Itchy skin, darker pee and paler poo than usual
- Loss of appetite
- Fatigue
- Fever
Other symptoms can affect your digestion, such as:
- Nausea and vomiting
- Changes in bowel habits
- Stomach and/or back pain
- Indigestion
- Bloating
For more information visit:
https://www.nhs.uk/conditions/pancreatic-cancer
https://www.cancerresearchuk.org/about-cancer/pancreatic-cancer
https://www.pancreaticcancer.org.uk/
Prostate Cancer - Symptoms
- Urinating more frequently, often during the night (nocturia)
- Increased urgency to urinate
- Urine hesitancy (difficulty starting to urinate)
- Difficulty in passing urine
- Weak flow
- Feeling that your bladder has not emptied fully
- Blood in urine or semen
For more information visit:
https://www.nhs.uk/conditions/prostate-cancer
https://www.cancerresearchuk.org/about-cancer/prostate-cancer
Skin Cancer
Patients who are on antifungal medication are at an increased risk of developing skin cancer, therefore it is important to understand the symptoms and take adequate precautions with sun exposure to reduce the risk.
Symptoms
There are three main types of skin cancer:
- Malignant Melanoma
- Basal Cell Carcinoma (BCC)
- Squamous Cell Carcinoma (SCC)
Broadly, the signs are (shown in the image below):
BCC
- Flat, raised or dome-shaped spot
- Pearly or skin-coloured
SCC
- Raised, crusty or scaly
- Sometimes ulcerated
Melanoma
- An abnormal mole that is asymmetrical, irregular and has multiple colours

For more information visit:
https://www.cancerresearchuk.org/about-cancer/skin-cancer
https://www.nhs.uk/conditions/melanoma-skin-cancer/
https://www.nhs.uk/conditions/non-melanoma-skin-cancer/
Throat Cancer
Throat cancer is a general term that means cancer that starts in the throat, however, Doctors don't generally use it. This is because there are different types of cancer which can affect the area of the throat.
More information can be found here: https://www.macmillan.org.uk/cancer-information-and-support/head-and-neck-cancer/throat-cancer
General symptoms
- Sore throat
- Ear pain
- Lump in the neck
- Difficulty swallowing
- Change in your voice
- Unexplained weight loss
- A cough
- Shortness of breath
- A feeling of something stuck in the throat
For more information visit:
https://www.nhs.uk/conditions/head-and-neck-cancer/
Bladder Cancer - Symptoms
- Increased urination
- Urgency to urinate
- A burning sensation when passing urine
- Pelvic pain
- Flank pain
- Abdominal pain
- Unexplained weight loss
- Leg swelling
For more information visit:
https://www.nhs.uk/conditions/bladder-cancer/
https://www.cancerresearchuk.org/about-cancer/bladder-cancer
Bowel Cancer - Symptoms
- Bleeding from the bottom and/or blood in poo
- A persistent and unexplained change in bowel habit
- Unexplained weight loss
- Fatigue
- A pain or lump in the stomach
For more information visit:
https://www.bowelcanceruk.org.uk/about-bowel-cancer/
https://www.cancerresearchuk.org/about-cancer/bowel-cancer
(1)Smittenaar CR, Petersen KA, Stewart K, Moitt N. Cancer incidence and mortality projections in the UK until 2035. Br J Cancer 2016 Oct 25;115(9):1147-1155
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Fungal Infection Trust
[et_pb_section fb_built="1" admin_label="section" _builder_version="4.16" global_colors_info="{}" theme_builder_area="post_content" custom_padding="8px||8px||true|false"][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"][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"]The Fungal Infection Trust (FIT) has supported the National Aspergillosis Centre for decades, enabling many of our patient support websites and support groups to run smoothly.
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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Aspergillosis and Fatigue
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People who have chronic respiratory illness frequently state that one of the main symptoms that they find difficult to cope with is perhaps one that doesn’t leap to mind as a major problem for most of us who do not have a chronic illness – fatigue.
Time and time again people who have aspergillosis mention how exhausted it makes them feel, and here at the National Aspergillosis Centre we have determined that fatigue is a major component of chronic pulmonary aspergillosis (CPA – see Al-Shair et. al. 2016) and that the impact of aspergillosis on a patients quality of life correlated well with the level of fatigue suffered.
There are many possible causes of fatigue in the chronically ill: it could partly be a result of the energy that the immune system of a patient puts into fighting off the infection, it could partly be a consequence of some of the medication taken by people who are chronically ill and possibly even the result of undiagnosed health problems such as anaemia, hypothyroidism, low cortisol or infection (e.g. long COVID).
Because of the many possibilities that cause fatigue, your first step in trying to improve the situation is to go and see your doctor who can check for all common causes of fatigue. Once you have established that there are no other possible hidden causes you might read through this article on fatigue produced by NHS Scotland containing lots of food for thought and suggestions to improve your fatigue.
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