Coronavirus (COVID-19) Social distancing introduced

[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"][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"]

24th March: Social distancing measures extended

The government last night asked us all to stay at home to protect each other and reduce pressure on the NHS. 

Full information on staying at home and away from others is available from the government website

People with CPA are classed as extremely vulnerable. Stay at home at all times and avoid any face-to-face contact for at least 12 weeks. More guidance on shielding and protecting people defined on medical grounds as extremely vulnerable is available from Public Health England.

17th March: Social distancing measures introduced

The government has issued guidance is for everyone advising on social distancing measures we should all be taking to reduce social interaction between people in order to reduce the transmission of coronavirus (COVID-19). It is intended for use in situations where people are living in their own homes, with or without additional support from friends, family and carers. If you live in a residential care setting guidance is available.

Government advice is for everyone aged 70 and over, regardless of medical conditions, to follow social distancing measures. Full guidance on the social distancing measures we should all be taking to reduce social interaction between people in order to reduce the transmission of coronavirus is available on gov.uk. This includes information for people with pre-existing health conditions including asthma and COPD. Please read it.

GOVERNMENT ADVICE ON SOCIAL DISTANCING

 

12th March: Precautionary increase in protective measures advised

COVID-19 is starting to spread in an unconstrained manner in the UK with over 460 cases identified. This makes it a little more likely that the virus will spread through the community, increasing the number of cases. UK government measures are slowing this spread down so the total number is still relatively small, with only a handful of cases in each area so the chances any one person will be infected are still really small, but if you are a chronic respiratory disease patient with a disease such as aspergillosis you are at slightly higher risk of infection. Consequently we are recommending that you use additional protective measures.
In addition to frequent handwashing, no touching of your face and limiting direct contact with other people the suggestion is that you start social distancing so that any infectious person will find it very difficult to pass on the virus. The link explains everything in detail but essentially you avoid groups, people with symptoms, close contact ie less than 2 metres away from someone for more than 15mins. Also minimise use of public transport.

 

9th March : YOUR QUESTIONS ANSWERED BY A RESPIRATORY EXPERT

A useful series of questions specifically aimed at bronchiectasis, COPD, asthma, cystic fibrosis and more. Written by European Respiratory Society (ERS) expert Professor James Chalmers. 

Answers to common questions about COVID-19 from the NHS

Public health Advice

British Thoracic Society guidance - UK region specific

BBC information resources on COVID-19

What do I need to know about the coronavirus?


[/et_pb_text][/et_pb_column][/et_pb_row][/et_pb_section]


9th Advances Against Aspergillosis and Mucormycosis Conference

Between the 27th and 29th February 2020, scientists from around the world will be meeting in Switzerland to discuss the latest developments in aspergillosis and mucormycosis research. At these conferences, participants have the opportunity to view posters and attend talks on the latest research, as well as meeting other experts in the field. The National Aspergillosis Centre team was planning on attending the event, however due to concerns about Corona virus this has not been possible. Instead, Graham has chosen a few posters that he thinks may be interesting to patients and carers, and he has explained these on video. View these videos by clicking on the links below (you must already be, or become a member of the Facebook support group to do so):

Impact statements from people living with aspergillosis have also been displayed at the conference on World Aspergillosis Day, bringing patient voices to a largely academic event:

patient impact statement about aspergillosis

If you would like to know more about the conference, click here. If you would like to read the programme of abstracts yourself, you can find it here.


NAC Comms team becomes NAC CARES team

“So, what do you do?” What a difficult question! The communications team at the National Aspergillosis Centre have been mulling this one over a lot recently and have decided that they need to make things clearer.

They have been known as ‘the comms team’ for a long time. But what does that really mean? How can they explain what they really do? They have broken it down into five main areas and have become NAC CARES.

NAC CARES
NAC CARES: Community Awareness Research Education Support

This is what they want to communicate about the National Aspergillosis Centre.

Community

NAC is at the centre of a community. That community is made up of people with aspergillosis, their families and carers, clinicians, researchers, academics and allied health care professionals. We work with the Aspergillosis Trust, the Mycology Reference Centre Manchester and the Manchester Fungal Infection Group. We’re available to consult with staff from any other hospital if they need specialist advice about aspergillosis. Together we are fighting against aspergillosis.

Awareness

We strive to raise awareness of aspergillosis. We champion World Aspergillosis Day. We provide research and clinical resources for academics and health care professionals. We provide free information to patients.

Research

NAC has an extensive clinical research portfolio including azole resistance, optimising diagnostics, clinical outcomes and quality of life, genetic basis of disease and immunity.

Education

We provide information to patients about aspergillosis. We also provide diagnostic and clinical training to health care professionals and technical staff through a variety of online learning resources.

Support

NAC is a friendly place to visit both on and offline. Our staff are helpful and knowledgeable. As well as clinical care, we support people with aspergillosis and their families by hosting face to face and online support groups.

NAC CARES!

The first letter of each of these areas spells out the word ‘cares’. And that’s exactly what we do. So, your NAC comms team will now be known as your NAC CARES team.

Graham Atherton, NAC CARES team lead, said "This is a real step change for us in terms of communicating our function to the people who use our service."


What are the risk factors for Chronic Pulmonary Aspergillosis returning once antifungal therapy has been stopped?

Chronic pulmonary aspergillosis (CPA) can be a scary disease. People can be on antifungal drugs for a very long time, sometimes indefinitely. This can be worrying. Is it ever possible to come off antifungal drugs? Will the fungus ever go away? If the drugs are stopped, might the fungus come back again?

A recent research paper from the National Aspergillosis
Centre has attempted to find some answers.

The researchers wanted to know how many people with CPA
relapsed once their antifungal treatment was stopped. They also wanted to know
what the risk factors for relapse might be. Understanding these risk factors
might help to manage the disease better and might tell us which patients are at
a low risk of relapse. This means that for these patients, treatment could be
stopped earlier and so antifungal resistance, toxicity and cost could be
reduced.

The scientists looked at people with aspergillosis who were treated at the National Aspergillosis Centre between 2009 and 2017. They identified at 102 people whose antifungal treatment (mainly voriconazole) was stopped during this period.

In 21% of people, CPA came back (21 out of 102 people). The key risk factors for relapse were the involvement of both lungs and, to a lesser extent, the presence of an aspergilloma.

In a different study of patients with CPA who were mainly treated with itraconazole, presence of disease in more than one lobe on CT scan, younger age and longer duration of treatment to achieve remission were associated with a higher risk of relapse.

Even though the authors found that CPA came back for 21% of people in this study, the chance of relapse is a very difficult thing to predict. Many people with CPA have other conditions which affect their health such as bacterial infections, non-tuberculous mycobacterial infections or COPD. Doctors might look at information from scans, microbiology or blood test results to help inform them as to whether relapse is likely, or they might rely on whether a person seems to be ‘getting worse’ clinically.

That said, this study showed that where both lungs are affected and an aspergilloma is present, the likelihood of relapse is increased, although it should be noted that antifungals were stopped mainly because of side effects or resistance development, and not because of achieving remission of disease.

The full paper is available on the Aspergillus Website.

This is a figure from the research paper showing that people with bilateral aspergillosis (i.e. aspergillosis involving both lungs) are more likely to relapse that people with aspergillosis involving one lung (unilateral disease). The green line is for both lungs, the blue line is for one lung.
This is a figure from the research paper showing that people with bilateral aspergillosis (i.e. aspergillosis involving both lungs) are more likely to relapse that people with aspergillosis involving one lung (unilateral disease). The green line is for both lungs, the blue line is for one lung.

Rare disease spotlight: interview with an aspergillosis patient and consultant

[et_pb_section fb_built="1" admin_label="section" _builder_version="4.16" global_colors_info="{}" theme_builder_area="post_content" custom_margin="|-29px||-29px||" custom_padding="2px||2px|||"][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_padding="4px|||||" custom_margin="|-121px||7px||"][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" width="100%" custom_margin="|102px||102px||true" custom_padding="|0px||||"]

In collaboration with Medics 4 Rare Diseases, the Barts and the London Immunology and Infectious Diseases society recently held a talk about aspergillosis. Fran Pearson, a patient diagnosed with the condition, and Dr Darius Armstrong, a consultant in Infectious Diseases and Mycology, were both invited to speak at the event. Watch the full talk below to learn more about both the patient's experience of diagnosis and the challenges faced by doctors when diagnosing patients with infectious diseases.


[/et_pb_text][/et_pb_column][/et_pb_row][/et_pb_section]


World Aspergillosis Day 2020

World Aspergillosis Day 2020 is almost here! The big day is February 27th and here's a few ideas of ways that you can support the occasion and help to raise awareness of aspergillosis.

Submit your selfie!

The Aspergillosis Trust are asking people to show their support by downloading a selfie card, taking a selfie with it, and uploading it to their 'Selfie Hall of Fame'. Please get involved and show your support!

Add a WAD2020 graphic to your email signature.

We have produced a signature graphic for you to use on emails. Feel free to save your favourite colour version and share it far and wide!

Show your support for WAD2020 on your social media profile pictures.

You can support the campaign to raise awareness of aspergillosis by adding our twibbon to your profile picture. Twibbon will create a new profile picture for you containing the WAD2020 logo. Download this image and upload it to Twitter. Voila!

For Facebook it's much simpler! Just add our frame!

Show your support for WAD2020 on your social media profile pictures.

You can support the campaign to raise awareness of aspergillosis by adding our twibbon to your Twitter profile picture. Simply visit https://twibbon.com/support/world-aspergillosis-day-2020 and add the twibbon to your profile picture in. Twibbon will then create a new profile picture for you containing the WAD2020 logo. Download this image and upload it to Twitter. Voila!

For Facebook it's much simpler! Just add our frame!

Use our social media header images for LinkedIn, Twitter and Facebook.

Please take a look and download and choose your favourite colours.

Display our poster in your office or in a window at home

Print out and display our WAD2020 poster.

Host a coffee morning to raise awareness

On February 27th at 10am The National Aspergillosis Centre will be hosting a virtual coffee morning whilst at AAAM2020. We'll be talking online to patients, researchers and clinicians. We invite you to run your own events at home and at work. So why not gather your friends, family or colleagues, make a brew, enjoy a slice of cake and tweet about taking a moment out of your day to raise awareness using the hashtag #worldaspergillosisday2020

Here's a few assets to download to decorate your home or office. There's bunting, cake labels and invitations!

WAD2020 Coffee Morning Assets


Hope on the horizon: Novel antifungal treatments in development

[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" custom_margin="0px|auto|0px|auto|true|false" 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"]

A review published recently describes the new antifungals that are in the pipeline that offer hope for the future.

The new drugs described in the review have novel mechanisms of action to overcome resistance, and some offer new formulations providing distinct advantages over current therapies to improve safety profiles and reduce interactions. For example, Rezafungin has shown activity against Aspergillus species and has reduced liver toxicity, better penetration and less risk of resistance.

It is very encouraging to see that several of the compounds have potent activity against Aspergillus species and that Ibrexafungerp, a compound affecting the fungal cell wall, has activity against several Aspergillus species and is in phase 3 clinical trials.

The potential benefits of this drug include:

  • Oral and IV formulation
  • Active against resistant strains
  • Better penetration (IAC)
  • Minimal drug-drug interactions

In addition, olorofim, VL2397 and ABA all have potent activity against Aspergillus species and are in various stages of clinical trial. All in all, there is real hope on the horizon


[/et_pb_text][/et_pb_column][/et_pb_row][/et_pb_section]


How can I protect myself from air pollution?

Air pollution is increasingly reported as being something we need to improve if we are to prevent damaging the health of millions of people. Anyone who experienced the 'pea-souper' fogs of the 1960s and earlier needs little introduction to the subject, but the Clean Air Acts in the UK in 1956, 1963 and 1993 sorted that out didn't they? After all, we don't see those dreadful weather conditions any more do we and now that we no longer burn coal very much those chimneys belching black smoke are a thing of the past?

In truth, conditions are very much better now compared with the 50s but we are a long way from eliminating the air pollution problem, The rise of the motor car and diesel goods transport is a major factor and the harmful, irritant gasses released are much less obvious so tend to be hidden. In the UK these pollutants are now closely monitored by the Environmental Agency and include nitrogen dioxide, sulfur dioxide, carbon monoxide, pm2.5 particulates.

Exposure to airway irritants is still very common outside the home - the popularity of wood-burning stoves in urban and suburban areas is a good example of a new trend that can make matters worse. Bonfires and fireworks are a problem at some times of the year and Global Warming may also lead to increased risk of uncontrolled burning such as happened on the moors surrounding Manchester in 2018 and happens in the US and are currently ongoing in large parts of Australia. Burning causes vast quantities of very fine dust particles and gasses to be released that someone with asthma can find very disabling and after the ongoing bushfires National Asthma Council Australia have published useful help about how to cope with asthma if you find yourself in a smoky area.

An excellent review of the harm air pollution can do to our health and a call to government to take action was released in 2018 by the Royal College of Physicians (Every breath we take: the lifelong impact of air pollution ) and it has been followed up two years later in 2020 when, rather discouragingly they note that some chances to change things have already been missed and progress has been minimal: https://www.rcplondon.ac.uk/news/reducing-air-pollution-uk-progress-report-2018

Is there anything we can do to reduce prevent us from inhaling these irritants?

The British Lung Foundation has an extensive article on this subject for outdoor air. They aren't particularly supportive about the use of facemasks but some aspergillosis patients report that there is some benefit, especially when travelling or gardening.

Indoors as long as we keep doors and windows closed we can keep out a lot of the pollution in the outside air, but of course, it is not always possible to do so as we also need to vent out excess moisture from our homes at regular intervals eg when we shower, bathe, cook or do the laundry. Air filters for use in the home have long been available varying from the token small device to large floor standing devices but are they any good? The answer is that they can reliably clean some things out of the air provided that they are big enough to suit your room size. Good Housekeeping has written a useful guide.

There is a freely available world map of air pollution at https://waqi.info/

map of air pollution

 


'Smart shirt' used to monitor lung function

Hexoskin smart shirt
Hexoskin - the technology used to monitor breathing in this study

'Smart shirts', which are already used to measure lung and heart function in athletes, have recently been tested to determine their reliability in monitoring the lung function of healthy people performing everyday activities. The shirts were found to be reliable, giving researchers hope that they may be used in the future to remotely monitor the lung function of people with lung disease.

Smart shirts, called Hexoskin, use the stretching and contraction of the fabric to sense the volume of air inhaled or exhaled with each breath. They then send this data to an app, where it can be reviewed. The Hexoskin is comfortable and could be worn under clothing, providing an alternative to the bulky equipment traditionally used to measure breathing.

Though the technology is expensive and more work is needed, this study provides hope that the lung function of lung disease sufferers could be monitored remotely and simply by doctors. This would have the advantage that any deterioration of the condition could be recognised at an earlier stage and appropriate medical interventions could be initiated more rapidly. According to one researcher, " Ultimately, we want to improve patients' quality of life. If we can accurately monitor patients' symptoms while they go about their normal activities, we might be able to spot problems and treat them sooner, and this in turn could mean less time in hospital."

Source: 'Smart shirt' can accurately measure breathing and could be used to monitor lung disease


Bedding, allergies and lung health

Image showing crumpled bedding

A recent case report in the British Medical Journal finds that a man has been treated for severe lung inflammation and breathlessness as a result of an allergy to his feather bedding. The source was found after potential triggers - such as his pets and a small amount of mould in his home - had been ruled unlikely, and it was discovered that his symptoms had begun soon after the purchase of new feather bedding. Blood tests revealed antibodies to bird feather dust and he was diagnosed with 'feather duvet lung', a severe immune response to the organic dust from the goose or duck down found within duvets and pillows. Left untreated the condition can cause irreversible scarring to the lungs.

Exposure to allergens can worsen the symptoms of people who suffer from allergies. In many cases, the more allergens there are in an environment, the worse it gets for the sufferer; for some people reducing the amount of allergen can help. The success of this approach depends on which allergen a person is allergic to (you can get tested by your doctor to check this), but if you find that your allergy is to indoor allergens such as dust mites or pet dander it can be worth trying to reduce your exposure to those allergens in your home. Likewise, if your allergy is to pollen or other allergens usually found outside the home, then you can attempt to filter incoming air. This may not work for you – take medical advice first before spending lots of money on ‘anti-allergy’ devices. However, if you find that there may be some point in trying to reduce your exposure to allergens in the home you will find a variety of products designed to do this on the Allergy UK website.

The Asthma charity Allergy UK provides a wide range of services to people suffering from allergies, including supervising a range of retail products that have been properly tested and assessed for efficiency at reducing our exposure to a range of allergens. For those sensitive to fungi we would point out in particular the pillow & mattress covers and HEPA filtered vacuum cleaners, but there are many more. For some homes (or places of work) there are underlying problems of damp - removing the sources of damp will also reduce the amount of fungi in your home and should improve your allergies.

The Allergy UK Seal of Approval

Our main endorsement is the ‘Seal of Approval’. When you see a product with this logo on it, you have the reassurance that the product has been scientifically tested to prove it is efficient at reducing/removing allergens from the environment, or that the product has significantly reduced allergen/chemical content.

The testing is carried out by an independent laboratory to protocols which have been created for the Seal of Approval by leading allergy specialists, specifically to benefit the sufferers of allergy, asthma, sensitivity and intolerance.