Aspergillosis Community
Booklet
Autumn 2014
National Aspergillosis Centre
Wythenshawe Hospital
Schools Artwork
In 2012 we ran an art competition for schools to raise awareness of aspergillosis. This entry was highly commended
Welcome!
This booklet is intended for all patients & carers at the National Aspergillosis Centre who do not have access or prefer not to use computers. For those who do use comuters there is the Aspergillus Website
This booklet is the idea of the Patients & Carers Support Group that meets every third Friday of the month in the Altounyan suite, which is just down the corridor from this clinic. Patients & Carers have suggested or provided most of the content. If you have suggestions for subjects we can mention or content we can provide there are contact details available elsewhere in this booklet, or come to our meeting sometime!
Please feel free to take this booklet home to keep handy and read at your leisure.
Contents are listed on the back page.
Gardening Hazards
The autumn is a time of decomposition in the garden – all that growth that came forth in the summer is now dying back. Nature has several means by which it disposes of all that waste and of course gardens love the rotted compost that is provided by these processes.
However fungi – particularly Aspergillus – play a major part in this decomposition and will grow quite invisibly throughout the compost, often releasing billions of spores. People who have aspergillosis or allergic asthma must take steps to avoid inhaling this material when gardening as it can irritate their breathing. It is important to avoid being present when high risk activities are happening e.g. moving or disturbing any dead plant matter (compost), opening bags of dead plant matter (e.g. bark chippings) or even digging soil.
Facemasks are available that reduce the risk of inhaling fungal matter. If purchasing ensure the facemask conforms to FFP2 or FFP3 regulations.
NB walking through piles of leaves is also hazardous – avoid!
What is Aspergillus?
Aspergillus is a common fungus found throughout the world, spread by microscopic spores which float in the air. We all breathe them in most of the time but most of us have efficient immune systems that kill the spores. Some people do not manage to kill all of the spores; sometimes because they are undergoing treatment that suppresses their immune systems (e.g. transplant patients, bone marrow transplant recipients), but sometimes because they are genetically susceptible (e.g. some asthma sufferers) or possibly because they have breathed in many more spores than is usual. They develop aspergillus infections, known as aspergillosis
Allergic Bronchopulmonary Aspergillosis (ABPA)
You have a fungal infection deep down in your lungs. This irritates the lung tissue and causes scarring. The infection is treated with antifungal medication and the inflammation and scarring is reduced using steroids
Chronic Pulmonary Aspergillosis (CPA). Your lungs have been damaged in some way in the past (e.g. tuberculosis) and the fungus can grow in the affected area. Sometimes it grows as a fungal ball (i.e. aspergilloma) in the cavity. Sometimes several cavities are involved (CCPA).
Invasive Aspergillosis. Almost exclusively effects very highly immune suppressed people e.g. Transplant patients, bone marrow transplant recipients. Must be treated very urgently which is why this group of patients are retained in hospital during the danger period of their treatment.
Ask for a Leaflet
We have leaflets available in Clinic or on-line on the following topics:
How can I reduce the risk of Aspergillus Infection? - What is it? How it is treated? How can it be prevented? Intended for people who are immune-compromised
A guide to Allergic Broncho-pulmonary Aspergillosis (ABPA) - Useful guidelines for sufferers of ABPA. How is it diagnosed? What is the best treatment?
A guide to Chest Physiotherapy - Intended for sufferers of aspergillus chest infections such as ABPA, aspergilloma where excess lung secretions (or mucus, sputum, phlegm) are a problem.Chest Clearance Technique.Phil Langridge's(NAC Aspergillosis Specialist Physiotherapist)Top Ten Tips for Exercise.
Nutrition and Health - Food and aspergillosis. Diet and steroid therapy. Useful for everyone.
Allergic Fungal Sinusitis (AFS) - What is it? What are the symptoms? How is it treated?
Aspergilloma and Chronic Pulmonary Aspergillosis (CPA) - What is it? What causes it? Am I going to get it? Tests. How is it treated? Can it be cured?
Severe Asthma with Fungal Sensitivity (SAFS) - What is asthma? What has mould got to do with it? How will I know? How is SAFS treated?
Be Aware: Damp Homes
Damp in the home is usually caused by condensation – this starts to become a particular problem in the autumn as the weather gets colder and we close our windows more often.
Damp is known to cause health problems – asthma, allergy. Many with aspergillosis and asthma are particularly affected.
Damp is unwanted water, moisture that has become persistent and is causing a problem (or going to cause a problem) to the structure or decoration of the building. Ifit persists it can cause rot and the growth of mould.Once moisture becomes persistent it can: Stain wall/paint/wallpaper, cause surface coatings to lift, damage wooden flooring and cause mould growth.
Moulds are present in the air at all times. To grow they need to settle on a food source (paper/paste/plasterboard/dirt) and be provided with some moisture. If the moisture dries quickly (a few hours) little growth will occur, otherwise growth will begin, invisibly at first, then dark, black/brown/green patches develop.
When does mould become a problem? - If the mould is in a normal “wet” room (bathroom/kitchen) on surfaces designed to be wet, then it can be wiped with cleaner and disinfectant.
If a mould is in a room which is not designed to be wet or/and on surfaces not designed to be wet, there is a problem. Recent studies have shown that the appearance of mould patches larger than a postcard was evidence of a damp problem that could cause health problems.
What do we do about it? - Identify the source of the moisture and stop it. Most damp is due to condensation, but you should also check for broken guttering or leaking downpipes and pouring water down the outside wall when it is raining. The damp could also be caused by leaking internal pipes.
Small amounts of damp could be superficial but don’t just paint over it. Much of mould is invisible so use a disinfectant - 10% bleach is effective as are other supermarket fungicides and it helps to add in some detergent to aid cleaning. If you are sensitive or have aspergillosis/asthma, don’t do this yourself and ensure the room is well ventilated to dry it out.
Large amounts of mould growing throughout material – use a professional company to clean and replace material – get a recommendation through an ISSE Surveyor (
How do we stop damp recurring? – prevent moisture accumulating, ventilate until dry. Most damp is condensation caused by lack of ventilation. Ventilate more to remove moisture – open windows, install vents, make sure vents are clear. Remove/reduce sources of water in the air – open windows when showering/boiling water in the kitchen, dry clothes outside or in a vented dryer. New homes can have very little airflow. Older homes with fireplaces may need to have their natural vents restored.
What health problems can occur?Those with asthma & allergic aspergillosis and sinusitis may find some symptoms worsening – it is worth keeping moulds out of your home!
Creative Writing
At one of the Support Group Meetings, we talked about Creative Writing and how Poetry and Prose can help express feelings and enhance communication. The following poem was written by our monthly support group as a result of our discussions.If you feel inspired, we would love to receive your poems or short stories.
Hospital car park
Here I lie in the rush of life
under engines revving, headlights shining as rain falls
andtyres track through puddles.
Carsare jostling, then parking higgledy piggledy.
Peopleare coming and going: happy, anxious, sad, relieved.
Somedash, others are sauntering along.
Isee pregnant women waddle in
andcome out with bundles of joy.
Phonesare ringing, worry, laughter, children crying
whowanted to go before they came.
Nowsomeone’s cursing
“Spacebut no spaces,
linesbut no ends,
pay-machine
butno change.”
Iam very important – people would be angry
ifI wasn’t here. I’m taken for granted!
Butwhen I feel downtrodden, unloved, forgotten
underthe weight of traffic, I remember
whenthere were fields around here:
bird-song,sheep baa-baaing, herds of cows,
rumblingtractors and horse-drawn carts,
familypicnics and the shouts of ball games.
Iremember the charity days: people dressing up and stalls.
Iremember the nurses’ home and sanatorium,
tuberculosis patients getting the air.
Or, whenI feel downtrodden, unloved, forgotten,
I candream of waking on Christmas morning
fullof snow – with not a single tyre track.
I can dream of waking re-surfaced with sleek black tarmac
andflashy yellow lines showing patients where to park
– or that Santa has left me covered with sports cars!
PerhapsI could retire somewhere hotter, less wet?
Ormove to a residential area and make friends.
Butmore than anything, I dream
of no pain beinggiven out to anyone.
I dream ofevery family
who went in worried
returningto their car
witha smile on their face.
I dream of all those moments
when I am a garden
ofgood news.
Written with Caroline Hawkridge, Writer in residence
Personal tips on keeping well
We recently received a letter from someone who has aspergillosis describing how they manage to keep well in their day to day life without having to resort to more medication. After some discussion at our patients meeting we liked them so much we thought them worth reproducing here – let us know what you think!
- Avoid getting over-tired – go to bed at a reasonable time
- Try to avoid getting cold – wear the right clothes for the right weather/temperature
- Avoid people with colds or infections – often difficult but try to minimise exposure where possible
- Avoid stress – again as we discussed not always easy – identify the sources of stress and try to eliminate them from your life as much as possible (remember the talk on stress and wound healing (see See page 13 for more details.
- Take care in the garden when clearing leaves – clear up early, smaller amounts and use a mask.
Miss Baldock August 2014
Phone buddies
My name is Julie Macintyre. My husband Dave was diagnosed with sarcoidosis, chronic necrotising pulmonary aspergillosis, with aspergilloma the condition caused him to have massive haemoptysis, attempts at embolisation , septic shock , pneumonia.
The medication caused him to have hallucinations and paranoia, he used oxygen 24 / 7 concentrator in the home and cylinder and liquid oxygen for going out.
Dave passed away but I still attend the monthly Patient Support meeting with my son David and still have contact with patients and their families who we met on the wards and clinics.
I am willing to talk to anyone about the experiences and challenges we faced honestly in a non-medical , layman’s way , or if you just want to chat with someone that isn’t part of your family circle who you feel you might upset don’t hesitate to contact me by leaving a message at 0161 291 5866
NOTE this is NOT a contact number for medical advice and Julie has no affiliation with the medical team, she is a fellow experienced carer.
Fundraising
The principle charity we support is the ‘Fungal Infection Trust’. It supports a lot of our work here at UHSM and also supports awareness and research across the world. The Trust is a major supporter of the Aspergillus Website ( and its sister website for patients at
The FIT was formed from the Fungal Research Trust and the patient-run charity the Aspergillus Trust quite recently (2012) in order to incorporate better support of patients’ needs and to act as the base for a series of initiatives intended to increased funding and research for fungal diseases.
You will be able to read of more of their work on their website at
Donations from patients are a significant source of its funding and donations can be made on their donations page, or by handing cash/cheques to a member of staff at clinic.
Please mark your donation with your name, address, reason for donation and indicate whether you wish to donate gift aid.
Make cheques out to ‘Fungal Infection Trust’
Thank you!
Stress
Stress is a killer and when we are already struggling with an infection or injury it can slow down recovery. We all need to minimize stress in our lives but as we all tend to lead lives filled with stress that can be easier said than done. So what can we do?
Recognise triggers. Keep a diary for 2 – 4 weeks and note when your stress increases. Note date/time/place of the stressful episode, what you were doing, who you were with, how you felt emotionally/physically, what you were thinking. Rate the stress episode from 1 – 10. Use this diary to identify those things that trigger your stress. Remember that lots of smaller things can add up to a lot of stress.
Take action to tackle stress. Different things work for different people – relaxation techniques, exercise, talking things through. Even if you eliminate just one or two smaller triggers it can be a big help.
Get support. It can be good to attend stress management classes or groups to help talk things out – your GP will be able to help. Our Patient & Carer support meeting are a source of social support that can help too. They happen on every third Friday of the month at 1pm (p14) here at NAC but there are also regional meetings (p15)
Slap it away it serves no purpose
Talk to others it often helps
Relax and take a deep breath
Engage in a new activity
Sing along to your favourite music
Stretch your legs and go for a walk
Online communities
Facebook Communities are far reaching, covering billions of people around the world. One of our main aims is to reach as many people as possible with information about aspergillosis infections and to let them know that we offer specialist advice and support based at the NHS funded National Aspergillosis Centre in Manchester, UK.
If you can get access to a computer – even a good mobile phone nowadays allows you to participate – you will be able to join our groups on Facebook ( or Yahoo! (
For those with computers, go to
No computer? No Problem
If you prefer a more face to face meeting to talk to fellow patients, carers and staff with lots of opportunity to ask questions and chat informally (and a free lunch) then our monthly meeting in the Altounyan suite (signposted from the North West Lung Centre clinic) is for you.
Park for £3 all day, leaving a note in your windscreen that you are attending our Aspergillosis Support Group and arrive at 1pm for tea & sandwiches.
Whatever you want to do - drop by and join in with one of the groups, they are full of friendly people who understand aspergillosis who are more than happy to chat.
Local Support Groups
We are a national centre more or less positioned in the centre of the UK, but there are many people who have to travel a long way to visit the clinic or visit our support meetings held at the Altounyan Suite, just down the corridor from the NAC clinic on the third Friday of every month.
Consequently we support the running of local groups in the hope that we will be able to develop a nationwide support network run by patients & carers. The intention is to offer everyone a local support group where you can phone the leader (or visit the page on Facebook) and meet up with fellow patients & carers closer to where you live.
Current groups:
Liverpool: 07715330814 Brenda Winslade
Wigan: 01257 426902 John Barker
West Midlands: 01384 235438 Jean Jones
East Midlands:01933 399042 Kate Montali
London:07917 899089 Bart Govaert
Yorkshire:0161 291 5866 Lin Holding Denton
News & Diary
12 – 13th October. UK Fungus Day. Events held around the UK and at Manchester University.
Ray Robinson
Some of you may recall Ray Robinson who regularly attended our meetings with his wife when we first started in 2009. Sadly after a long and courageous battle with his disease he died on 29th May 2014.
Contact details
Patient & Carer support can be accessed by phone at
0161 291 5811 (Chris Harris)
Or 0161 291 5866 (Graham Atherton)
We would be delighted to hear of any suggestions you may have to add to this booklet – this is your publication to adapt to your needs.