How do I cope with hair loss?
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Certain medications prescribed for aspergillosis may cause some hair loss. Losing your hair can be very difficult, and can affect your self-esteem; unfortunately there is a social stigma attached to hair loss and this can affect many people’s confidence, but there are ways to cope.
Join a support group:
Joining a support group is a great way to meet other people going through the same experiences as you, and to share tips and coping skills with one another.
- Local support groups: Alopecia UK has several local support groups based around the UK. Click here to find your closest meeting.
- Online support groups: If you are unable to attend a local meeting, or you’d just prefer to find support online there are Facebook support groups for the UK and worldwide community: Alopecia UK Facebook group and World Alopecia Community. Here you can ask questions and share your experiences with others who suffer from hair loss. You can also use the aspergillosis support groups on Facebook to talk to others also coping with aspergillosis and associated problems: Aspergillosis Support (Private) and Aspergillosis Support
Talk about it:
Hair loss can hugely affect your confidence and self-esteem. Talking about it with your family and friends can help them understand what support you need from them, and help you to understand that they don’t see you any differently.
If you are really struggling, you might want to seek help from your doctor. The lack of control over this sudden change in your appearance (as well as coping with a chronic illness) can make people very vulnerable to mental illnesses. It is important to try and recognise this and tackle it as early as possible – for more information on recognising and avoiding depression, click here.
Cover up:
There are several different ways to cover up hair loss, from small bald patches to more severe cases. More detailed information on the tips listed below can be found here.
- Haircuts and hairstyles: smaller bald patches can often be hidden with the right hairstyle. An experienced hairdresser will be able to help you choose the best haircut to cover up patches. If you’re worried about going into a salon, find a hairdresser who does home-visits. There are also many videos on YouTube that show you tips and tricks to style your hair over patches
- Wigs: With more severe hair loss, you might want to try a wig. There are many different types out there, so Alopecia UK has put together a detailed guide to choosing a wig.
- Head coverings: Headscarves, hats, head tattoos and camouflage products are all good and fairly cheap ways to cover up hair loss. These can be very individual and allow you to be flexible with your appearance.
- Make up: Losing eyebrow and eyelash hair can change your appearance more than you think, which can be upsetting. Make up tips, such as wearing fake eyelashes or drawing eyebrows on with a pencil can help disguise facial hair loss. There are also more permanent options, such as eyebrow tattoos, that can help you achieve a more natural look.
However you choose to deal with hair loss, there is plenty of support, tips and advice out there for you to access!
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Breathe journal June 2019 - 'Living well with a Chronic Respiratory Disease'
The current issue of the European Respiratory Society's journal, Breathe, focuses on living well with a chronic respiratory disease, and includes an article from an ABPA patient. Links to this patient voice article, and other pieces which may be of interest to aspergillosis patients are highlighted below.
Introduction: Living well with a chronic respiratory disease
Chief Editor, Claudia Dobler, introduces this issue in a short editorial. This covers a number of the burdens that lung disease patients can face, and the various ways in which they can achieve well-being and adjust to their circumstances in the face of chronic illness.
Living with allergic bronchopulmonary aspergillosis
Mike Chapman shares his experiences of living with ABPA and other respiratory problems. Many aspergillosis patients will identify with his experience of a lengthy and difficult journey to diagnosis, and trying to remain positive, despite debilitating health conditions.
Music and dance in chronic lung disease
This article covers the growing interest in using music and dance as part of a holistic approach to managing chronic lung disease. Several recent studies have focused on the benefits that music and dance have on the physical, mental and social health of those with chronic lung disease; this piece goes over some of this research, and the key gaps that are missing.
The role of cognitive behavioural therapy in living well with COPD
Anxiety and depression are common in people with chronic obstructive pulmonary disease and, as well as being major problems themselves, can interact with and worsen physical symptoms. This article again focuses on the holistic treatment of the patient, and suggests how we can incorporate CBT into routine care for those with COPD.
Where are the gaps in education in the field of rare lung disease? Perspectives from the ERN-LUNG educational programme survey
ERN-LUNG (the respiratory-focused European reference network) recently sent a survey out to healthcare professionals and patients to find out the gaps in rare lung disease education in Europe. From a patient's perspective, a large majority thought that there was a need for patient education at a European level, but only just over a 3rd were aware of existing resources. 95% thought that patients had a role to play in the education of professionals. Read the article to see the key conclusions from the survey.
Click here to read the full journal
Aspergillus – Pseudomonas interactions; a match made in heaven or hell?
In the last years clinicians and
researchers have realised that the interactions between microorganisms in
polymicrobial infections (when a single patient is colonised/infected with two
or more pathogens) are relevant for the progression of the disease. Contacts
between pathogens can affect their fitness (how well they can grow inside us)
and also impact on the response of our immune system. However, the research
into this novel and extremely complex area is still in its infancy and we need
to gain much more information before being able to understand what is going on
in each specific condition. It is suspected that in some interactions the
microorganisms may compete with each other, which is usually good for us.
However, in other types of interactions the pathogens may help each other,
which is of course detrimental for the patients. In the case of Aspergillus – Pseudomonas interaction it
is still not completely clear which is taking place, a positive or a negative
interaction.
Pseudomonas (mainly the species Pseudomonas aeruginosa) is a common
bacterial pathogen and Aspergillus
(mainly the species Aspergillus fumigatus)
is the most common fungal pathogen of the human respiratory tract. Both
organisms are able to grow in the lungs of immunosuppressed individuals and
also of patients with certain underlying diseases, such as bronchiectasis,
chronic obstructive pulmonary disease (COPD), hospital acquired pneumonia and
cystic fibrosis. Since the awareness of the importance of polymicrobial
infections is quite recent, there are not many reports of the incidence of
co-infection with these two pathogens yet. One of the few, from the end of
2018, reported a prevalence of co-infection in cystic fibrosis patients of
15.8% (1). That means that almost sixteen percent of all cystic fibrosis
patients may be co-infected with both Pseudomonas
and Aspergillus… This is of course
not trivial!
Several studies carried out in various
laboratories around the world would suggest that the interaction between Aspergillus and Pseudomonas is of competitive nature. That would indicate that they
weaken each other during co-infection, which could mean good news for patients.
However, there are also results, including some clinical evidence, that suggest
the opposite, the pathogens could be helping each other in the human lungs. What
seems clear is that having both pathogens is not good for the patients (2).
Therefore, we need to understand how these microbes interact during
co-infection to be able to decide which course of action is best, should we
treat against both or only one? Which one first, or both at the same time?
To address these
questions my research group, in the Manchester Fungal Infection Group, is
trying to understand the specific interactions that take place between Aspergillus fumigatus and Pseudomonas aeruginosa under conditions
that are similar to co-infection of the human lung.
We want to discover which interactions are the important ones. This will help us understand what is going on during co-infection and we can then use this knowledge to improve the management and treatment of patients.
Dr Jorge Amich | MRC Career Development Fellow
Manchester Fungal
Infection Group (MFIG)
1. Zhao J, Cheng W, He X, Liu Y.2018. The co-colonization prevalence
of Pseudomonas aeruginosa and Aspergillus fumigatus in cystic
fibrosis: A systematic review and meta-analysis. Microb Pathog 125:122-128.
2. Reece E, Segurado R, Jackson A, McClean
S, Renwick J, Greally P.2017.
Co-colonisation with Aspergillus
fumigatus and Pseudomonas aeruginosa
is associated with poorer health in cystic fibrosis patients: an Irish registry
analysis. BMC Pulm Med 17:70.
Yoga for lung condition patients
The Irish Lung Fibrosis Association has produced an hour-long video, which takes viewers through yoga exercises suitable for patients with lung fibrosis and other respiratory conditions. Exercise is key to a healthy lifestyle, and can improve quality of life in those who suffer from lung conditions. If you struggle to stand, the first half of the video is devoted to exercises that can be done sitting in a chair.
Further information about exercising with aspergillosis:
Major newspapers interview aspergillosis patients and publicise the growing problem of antifungal resistance
A recent article published in the Daily Mail includes an interview with 2 aspergillosis patients, both founders of the Aspergillosis Trust. The piece covers the debilitating symptoms that fungal infections can cause and highlights the growing problem of antifungal resistance throughout the world. The Daily Mail article was followed by a piece in The Times, covering many of the same issues. Articles about aspergillosis being published in such major newspapers represents a significant step in the fight to raise awareness amongst the public about such a rare and little-known disease.
Read the Daily Mail article here
Read The Times article here
Is patient-to-patient transmission of Aspergillus fumigatus in CF patients possible?
A new study from the Netherlands has challenged the widely held opinion that airborne transmission of Aspergillus fumigatus between patients with cystic fibrosis (CF) does not occur.
Chronic Pulmonary Aspergillosis (CPA) is a chronic condition affecting patients with structural lung damage such as that caused by CF. It is generally accepted that patients become colonised by A. fumigatus following the inhalation of spores from the environment.
Posaconazole works better than itraconazole and voriconazole against ABPA amongst Cystic Fibrosis patients
A recently published research paper suggests that Posaconazole works better than itraconazole and voriconazole against
allergic bronchopulmonary aspergillosis (ABPA) in patients with Cystic Fibrosis.
ABPA patients tend to have a hypersensitive response to Aspergillus species which results in inflammation, airway destruction and bronchiectasis. Cystic fibrosis (CF) patients are at risk of ABPA which then speeds up lung function decline. The current ‘gold standard’ treatment is prednisolone to reduce inflammation. Azoles have been used effectively as steroid alternatives but have various side effects and tolerance issues.
In the newly published paper the authors wanted to know if posaconazole, which is known to be less toxic and better absorbed than other azoles, was more effective at treating ABPA.
They analysed data from 596 CF patients, and reviewed the specific Aspergillus IgE levels and azole levels in blood samples. 32 patients were identified and included in the analysis. 11 had itraconazole alone, 12 had two different azoles and 9 received all three azoles. In total, 30 received itraconazole, 13 received voriconazole, 18 received posaconazole.
The authors found IgE levels to be significantly reduced when posaconazole was used, but not the other azoles, suggesting that monitoring posaconazole levels and altering the dose given to the patient to attain greater serum levels of IgE gives improved blood test results in ABPA patients.
Want to know more? Read the paper here!
Lung function tests
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At this month’s patient support meeting Phil Langridge, Specialist Physiotherapist at Manchester University NHS Foundation Trust, Wythenshawe Hospital, gave a fantastic talk all about spirometry and lung function tests.
He started the talk with a simple question “Do you look forward to lung function tests?” An audience member offered a simple reply “No, it’s purgatory”.
Lung function tests are hard. The thing is, they’re maximum function tests. The staff carrying out the tests sometimes sound a bit strict, firmly telling you to keep going and put more effort in. The tests are tough, and for some people they can take a while to recover from. That’s because they need maximum effort and it can take a lot out of some people.
Phil gave us an overview of most commonly used tests, starting with the spirometry test. Sometimes these tests can be done at your GP surgery with a practice nurse in a familiar setting. Sometimes they have to be done in hospital and this can lack privacy and be a bit intimidating. Try not to worry, staff understand this, just tell them you’re feeling nervous and they’ll do what they can to help so your test gives the best result possible.
Spirometry is used to:
- Detect respiratory disease
- Measure bronchial responsiveness
- Diagnose and differentiate between obstructive lung disease and restrictive lung disease
- Assess impairment from occupational asthma
- Conduct pre-operative risk assessments before anaesthesia or cardiothoracic surgery
- Measure response to treatment of conditions which spirometry detects – including aspergillosis.
What do lung function numbers depend on?
Lots of factors influence lung function numbers including age, gender, race, height and weight.
You might be predicted a number that can give you a feel of where you sit in the ‘normal’ range.
But you mustn’t fixate on that number, your performance in tests can be affected by things that are nothing to worry about, for example, you might have had a rubbish night’s sleep, skipped breakfast, had to wait ages in the waiting room for you appointment, already seen the physio to get a sputum sample and THEN had to do lung function. Your performance might then be very different to another day where you walk straight into the test room having slept like a baby, had a full English and been the first person seen that day.
What do the tests measure?
FEV1. This is the forced expiatory volume in one second i.e. how much air you can empty from your lungs in the first second – this is a good measure of your airway obstruction, or how ‘floppy’ your airways are. If it’s lower than expected, you might have airway obstruction. This is an important one to measure when doing drug effectiveness tests.
FVC. This is forced vital capacity and is the test where you’re blowing your hardest and the physio is shouting ‘Keep going! Keep going! Keep going!’ and you feel like you might pass out! FVC is the amount of air you can expel from your lungs in total and so you’re encouraged to ‘keep going’ because staff have to make sure you’re giving it your best and completely emptying your lungs so that the test result is accurate and meaningful.
You might have to wear a nose clip during FVC. This is so that you don’t release air through your nose which can give a lower result. You usually have to do FVC three times and an average result is taken, the machine you blow in to plots volume exhaled against time.
Peak Flow – How fast you can exhale. This test can be helpful as a monitoring tool for asthma but isn’t used that often in clinic.
The thing with these measurements compared to e.g. blood tests or CT scans is that they’re effort dependent. It’s important to remember that for the results to be meaningful and therefore informative and useful, you really have to do the best you can.
FVC can be lowered if you have an obstructive or restrictive condition. The ratio between FVC and FEV1 gives clues as to whether you have an obstructive condition or a restrictive condition and can help to diagnose conditions such as COPD.
A healthy person will have a ratio of around 80%, i.e. when they empty their lungs, 80% of air will be expelled in the first second, but if you struggle to get the air out because of obstructed or floppy airways it takes you longer to empty them, it may be lower. If it’s 70% or less it might be COPD.
Doing this at the GP can help to diagnose without having to send people to a specialist centre with all the extra costs of travel and parking and the extra anxiety of being in an unfamiliar setting. Lots of GP surgeries now have nurses who can do spirometry to help with COPD diagnosis.
The frequency of tests can vary too, depending on your condition, what treatment you’re on, if you’re changing treatment, if you’re having survey. If you’re stable with COPD and asthma and you’re being managed by your GP, you might only have lung function tests every 5 years or so. It’s very variable.
Here’s a top tip from Phil! Ignore your lung age if you’re told it! It’s scary and meaningless!
Phil is 41 years old, he is healthy, he doesn’t have lung disease, he cycles to work and he plays for the first team at his hockey club regularly. His lung age came out at 54!
That sounds scary! If you’re told it, it might make you feel very worried. We have patients who visit our clinic who have a lung age of 150 and they’re stable and have had that value for years and years. It really doesn’t mean anything.
Why might people be told it then? Well, it might go back to persuading people to stop smoking, it might scare people into quitting smoking if they’re told they have the lungs of a 90 year old but they are only 60. But this can back fire and be quite nihilistic, people might think ‘oh well, my lungs are shot to pieces already, no point in doing anything to ty and help, I’ll just carry on as I am’. It’s not a helpful measure at all.
Some of the questions from the session:
Can you expand the lung having had a lobe removed due to an aspergilloma?
After thoracic surgery you might be put on an enhanced recovery programme. You may be given an incentive spirometer to encourage you to take slow deep breathes. Deep breathing and exercise such as brisk walking can really help with recovery from surgery too.
Do you need to worry about bleeds when you’re doing lung function tests?
Deep breathing will not cause your lungs to bleed but your clinic will always be careful if you are known to have thin walled lung cavities.
Watch Phil’s talk and let us know what you think!
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Yeast that live in the human gut can trigger the immune system to cause inflammation in the lung, especially in patients with ABPA.
The yeast Candida albicans lives in the gut as a
commensal organism, usually without issue. C. albicans causes the body
to produce a particular kind of immune cell, called Th17 sensitive cells, that
stop the Candida from causing infections. A new research paper out this
month shows that the Th17 cells that react to Candida in the gut also
react to Aspergillus in the lung by a process called ‘cross reactivity’.
Cross reactivity was shown to increase the levels of Aspergillus
reactive Th17 cells in the blood of patients with Cystic Fibrosis, COPD and
asthma, especially during ABPA. This indicates that there is a direct link
between the normal, protective Th17 responses against Candida in the
gut, and harmful inflammation by Aspergillus in the lung.
In other words, problems in your lungs might be made worse by the normal immune response to Candida in your gut. This knowledge could affect the way we treat flare ups in future. For example, we already know that using antibiotics can increase the growth of Candida in the gut. This new information raises the possibility that increased Candida in the gut could cause increased lung inflammation or a ‘flare up’ of symptoms in patients with Aspergillosis, but further work would be needed to confirm this.
Read the paper here
Awareness of lung cancer risk in people with COPD
This article was originally written for The Hippocratic Post.
