Aspergillosis Weekly Support Meeting

[et_pb_section fb_built="1" admin_label="section" _builder_version="4.19.1" hover_enabled="0" global_colors_info="{}" theme_builder_area="post_content" sticky_enabled="0"][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="6px|auto|50px|auto|false|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"]

Image of a silver computer with a virtual meeting taking place. There are a number of people on the computer screen, and a mug to the left of the image.
Aspergillosis Patient and Carers Meeting

Here at the National Aspergillosis Centre, we understand how difficult it is living with a rare disease. Add in a global pandemic, increased social isolation and the fear of contracting Covid-19, and you have a perfect recipe for anxiety, stress and loneliness.

That is one reason why every Thursday at 10am (UTC) we run virtual support meetings via Zoom. They are free, everyone is welcome, and it is a fantastic opportunity to chat with other patients, carers and NAC staff.

Peer support is an invaluable tool when you are diagnosed with a rare disease like aspergillosis. It can help you realise you are not alone and provides an understanding environment to express feelings and concerns. Many patients attend our meetings who have been living with the disease for a long time, and they often share their experiences and personal tips for living with aspergillosis.

Why not come along and join us via the link below:

https://us02web.zoom.us/j/405765043

The passcode is 784131.
[/et_pb_text][/et_pb_column][/et_pb_row][/et_pb_section]


An aspergillosis diagnostic journey

[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_image src="https://aspergillosis.org/wp-content/uploads/2022/12/GM_Cover1-1.jpg" title_text="GM_Cover1-1" _builder_version="4.19.1" _module_preset="default" width="89%" module_alignment="center" global_colors_info="{}" theme_builder_area="post_content"][/et_pb_image][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"]

Aspergillosis is a rare and debilitating fungal infection that is caused by aspergillus mould. This mould is found in many places, including soil, rotting leaves, compost, dust, and damp buildings. There are several variants of the disease, mostly affecting the lungs, and diagnosis is difficult because symptoms are like those of other lung conditions. 

Gwynedd Mitchell is 62. She has two adult children and lives with her husband in Wales. Gwynedd is no stranger to health problems; she has extensive allergies, has suffered breathing difficulties from six weeks old, and as a child, she was diagnosed with asthma and suffered frequent attacks. But in 2012, she was left shell shocked when she was diagnosed with three aspergillosis variants, allergic bronchopulmonary aspergillosis (ABPA), chronic pulmonary aspergillosis (CPA) and three aspergillomas (a ball of mould in the lungs).

This is her experience of the aspergillosis diagnostic journey.

Read more


Aspergillosis Monthly Patient & Carer Meeting

[et_pb_section admin_label="section"]
[et_pb_row admin_label="row"]
[et_pb_column type="4_4"][et_pb_text admin_label="Text"]Aspergillosis meeting. Image of a silver computer with a virtual meeting taking place. There are a number of people on the computer screen, and a mug to the left of the image.

Aspergillosis patient and carers meeting, today (Friday, 5 February) at 1 pm.

We understand how difficult it is at the moment with the ongoing national lockdown and this is part of the National Aspergillosis Centre's efforts to provide ongoing support for all patients (not just those of the National Aspergillosis Centre) and carers with aspergillosis.

This month we will be talking about:

  • Sars-cov-2 (Covid-19) vaccines and the recent developments
  • Immunodeficiency
  • Recapping on the global success of World Aspergillosis Day which took place on Monday 1 February
  • The importance of getting any new lumps, bumps or ongoing symptoms checked in support of World Cancer Day
  • There will also be time for general chat and questions.

The meeting is run by the National Aspergillosis Centre (NAC) staff. It is a great opportunity for any patients and their carers, family or friends to come along, ask questions and talk to other patients and NAC staff.

You can join the meeting for free on Zoom by clicking here, or using the meeting ID: 811 3773 5608.

The code to join is 784131. 

Or you can watch it live on Facebook.

If you want to know more about aspergillosis, the symptoms and who is at risk, click here:[/et_pb_text][/et_pb_column]
[/et_pb_row]
[/et_pb_section]


World Aspergillosis Day 2021

World Aspergillosis Day (Feb 1st every year) progresses every year and this year was no exception.

Social Media

We are only partway through the social media activity so this number will rise but as of the end of the day on 1st Feb the #WorldAspergillosisDay hashtag was shared 4.9k times & achieved an incredible reach of 806.6k - so up to that point over 800 000 people had seen content tagged with #WorldAspergillosisDay.

Medical Mycology involvement

Medical doctors are probably one of the most important groups we need to reach to be able to influence awareness of aspergillosis and to #ThinkFungus. We are extremely impressed that Medical Mycology groups in France, Brazil, Vietnam and Ghana held highly informative meetings on aspergillosis attended by hundreds of people, all in support of World Aspergillosis Day. Doctors and scientists from 4 different continents of the world have learned about aspergillosis, when to look for it, how to look for it, how to treat it. This is a step-change in awareness worldwide.

Medical Mycology Researchers 2021
Medical Mycology Researchers 2021

In the UK a major Wellcome Trust funded group met on World Aspergillosis Day on Zoom to discuss future aspergillosis research projects,

Patient Involvement

The National Aspergillosis Centre patients groups staged a session entitled 'Shortening the Patients Journey' designed to draw out and identify those aspects of the patient's journey undergone before they were diagnosed with aspergillosis. For some it was relatively quick - only a year or two in one case, but for most, it is a long journey with an ill-defined start, a series of stages in the dark with many twists and turns before they finally reach the end and are treated for aspergillosis, usually with very positive results that improve patient quality of life, sometimes markedly.

AT Supporters
AT Supporters

The Aspergillosis Trust, a patients advocate group generated lots of interest too, with supporters tweeting from all over the world.

The National Aspergillosis Centre CARES team devised a memorable contribution to make the day for their creative patients and carers - Aspergillusocks!

Aspergillusocks
Aspergillusocks

Pharmaceutical Industry Educational Involvement

Pfizer, who manufacture voriconazole can up with this informative graphic to mark World Aspergillosis Day.

Pfizer Educational - Aspergillosis


World Aspergillosis Day, 1 February 2021

World Aspergillosis Day is almost upon us!

 

The aim of World Aspergillosis Day is to raise awareness of this fungal infection that like several other fungal infections worldwide is often under-diagnosed. Diagnosis of aspergillosis is difficult and requires specialist expertise (eg UK National Aspergillosis Centre, a European Confederation of Medical Mycology Cente of Excellence), but it also frequently occurs alongside much more common illnesses such as asthma, tuberculosis, COPD. Fungal nodules occasionally get mistaken for lung tumours.

 

World Aspergillosis Day, patient & carers symposium on Shortening the Patient Journey. 10am UTC on Zoom.

 

To mark WAD 2021 the National Aspergillosis Centre will hold a symposium for patients & carers. The theme is ‘Shortening the Patient Journey’ and we will hold a discussion on everyone’s journey to getting am aspergillosis diagnosis. We will try to identify how we can all help shorten the journey.

There will also be a chance to contribute to what the list of research aims as defined by patients and carers should be. We aim to get our researchers to add some of them to their projects.

The event will be held on Zoom and will be free to attend. If you would like to join us on the day, you can access the details via Facebook.

Or by emailing admin@aspergillosisday.org

There are a number of activities happening on the day, you can find out more here. 


COVID Vaccine for Aspergillosis Patients

The UK NHS is now rolling out the Pfizer/BioNTech vaccine (approval documentation). As there is a limited supply of the vaccine, a limited capacity to deliver it and 65 million people to be vaccinated, a priority list has been drawn up by the  Joint Committee on Vaccination and Immunisation (JCVI).

People will be offered this vaccine according to their vulnerability to infection by COVID, or the risk that they will transmit the virus to a vulnerable person, so top priority is going to the eldest and those who care for them.

Once all of those over age 75 (approximately 5 million people) have been vaccinated then the extremely highly vulnerable will be vaccinated (i.e. on the grounds of their health condition. These are likely to be those who have had a letter from their doctor or UK.gov this year informing them that they are highly vulnerable, which includes chronic pulmonary aspergillosis, but not all allergic bronchopulmonary aspergillosis).

The UK has ordered enough vaccine for 20 million people so we have enough to vaccinate all of the most highly vulnerable people (defined as all those over age 50, plus all the with high vulnerability), however, the UK government has said that it will take until April 2021 to vaccinate all of these most vulnerable people.

NOTE there have been two cases of people who appear to have had an allergic reaction to the Pfizer/BioNTech vaccine in the first few days of the vaccination program. As planned these episodes have been very quickly reported to the regulatory authorities responsible for closely monitoring all health outcomes (UK Medicines and Healthcare products Regulatory Agency (MHRA)) and precautionary advice has been issued to everyone administering the vaccine.

 

For further details please see the following for your part of the UK

England advice

Welsh advice

Scottish advice

NI advice


COVID Precautions for the extremely vulnerable: Winter 2020

UK government has today announced its strategy to protect UK citizens from COVID-19 infection and to try to reduce virus transmission rates.

Part of these new guidelines refers to the extremely vulnerable eg people who have received the most recent letter or email from UK.gov advising them that they are clinical extremely vulnerable. If you didn't receive a letter and are still concerned you should contact your doctor.

PROTECTING THE VULNERABLE
75. Under recent national measures, the clinically extremely vulnerable have been advised
to take extra precautions and stay at home as much as possible. Local Authorities
have been working to ensure the right support is available for those that need it.

76. As the national restrictions end, the guidance to the clinically extremely vulnerable
not to go to work or school will also end. The Government will reintroduce the specific
advice for clinically extremely vulnerable people on how they can protect themselves
at each tier. The Government will constantly monitor the latest evidence and the
evolving situation in local areas to keep the advice for clinically extremely vulnerable
people up to date. Support will be available for those who need it, either through
Local Authorities in tier 3 areas or NHS Volunteer Responders. Supermarket priority
delivery slots will also continue for those who have already registered. The
Government has also made free influenza vaccinations available to the household
contacts of those on the Shielded Patients List.

77. A better understanding of the factors contributing to clinical risk has informed the
clinical advice from Medical Officers that most children can be removed from the
Shielded Patient List, following a clinician-parent conversation. It has also led to the
addition of those with Chronic Kidney Disease Stage 5 and of adults with Down’s
Syndrome to the Shielded Patients List, ensuring that they are provided with the best
advice on protecting themselves.

Read the full 2020 COVID-19 Winter Plan here


NHS: COVID-19. What if I’ve already got respiratory condition?

The NHS has published a set of guidelines for people who have a pre-existing respiratory condition and then get a COVID-19 infection. We reproduce some of the guidelines here but to read the full article click here.

We know that people with existing breathing conditions may have some additional concerns about catching the coronavirus. You are at no more risk of catching the virus than anyone else but if you do then you could become more ill. As COVID affects the lungs, it may be more difficult for you to judge what is causing symptoms.

Washing your hands on a regular basis (especially after visiting the toilet and before eating) and social distancing will reduce your risk of exposure to the virus and it is important you do this.

Should I take my medication as usual?

It is important that you continue taking the medication that has been prescribed for you. Otherwise, this could have an effect on your overall condition and possibly make you feel worse. If you have any concerns or queries about your medication please speak to your local pharmacist or your General Practitioner (GP). Your local surgery or pharmacist can organise a delivery for you.

It is very important that you clean your spacer and inhaler, and any masks/mouthpieces at least weekly.

If you do need to be admitted to hospital, please remember to bring your inhalers, and an up to date list of your medication with you.

 

What should I do if I feel unwell?

Early treatment for a flare-up (exacerbation) of your lung condition may avoid needing to go to hospital, and you may be able to be treated at home.

You should call your doctor who can assess your symptoms and likelihood of COVID. They can prescribe treatment for you.

If you have a community respiratory nurse they can offer further advice and support.

If you are unsure or outside doctors’ hours you can call 111 for advice or 999 if your breathing problem is very severe.

 

Does it matter if I smoke?

The chemicals and particles in cigarette smoke will irritate and damage your lungs if you do not stop. It is never too late to stop. Help and support is available, and you are four times more likely to stop with help from a stop smoking advisor.

www.quitready.co.uk

 

What can I do if I feel breathless?

If you have a ‘rescue’ inhaler you can take that as prescribed.

Using a handheld fan (not in a public place) moved slowly cheek to cheek can be helpful.

Try to slow your breathing (e.g. breathe in and count to four; breathe out slowly and count to seven).

If you have swollen feet and ankles you may have extra fluid in your body so you will should talk to your doctor about this.

 

What about routine hospital appointments?

Many hospitals have had to make a difficult decision to postpone many of the non-urgent hospital appointments and planned procedures due to the COVID outbreak. These decisions have been in line with national guidance, you will be offered another appointment when it is safe to do so.

Patients should be contacted by their local hospital teams to see how their appointment has been affected.

Some of the appointments may go ahead and some will be offered either face to face (urgent appointments or via the telephone (virtually).

If you are unsure what has happened to your appointment then please contact your local hospital switchboard or ring the number on the appointment letter.

However, it is important to remember that you should not attend if you have any symptoms of COVID, or have suffered with sickness or diarrhoea in the last 48 hours.

 

How do I know if I’m on the shielding list?

Please follow the link to the Government guidelines on shielding:

https://www.gov.uk/government/publications/guidance-on-shielding-and-protecting-extremely-vulnerable-persons-from-covid-19/guidance-on-shielding-and-protecting-extremely-vulnerable-persons-from-covid-19

 

For other useful information about respiratory conditions and COVID please see some useful links below:

www.blf.org.uk (British Lung Foundation)

www.patient.info


Vitamin D and COVID-19

[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="22px|auto|22px|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"]The news media have been extensively covering the publication of research papers over the summer that suggest that vulnerable people should all be taking vitamin D supplements as a precaution against being infected by COVID. If you have been reading these reports you may be wondering what you should do?

Vitamin D is sometimes referred to as the 'sunshine' vitamin as we are all able to make it in our skin when the skin surface is lit by the sunlight. Our bodies cannot make it without sunlight so NHS recommendations are for short periods of direct sunlight on our face and arms every day. We can also get vitamin D from our food, principally oily fish, eggs and red meat.

Evidence shows that many of us (20%) in the UK have quite low levels of vitamin D in our bodies, especially during the darker months (October - March) when we don't get much sunlight shining on our island. There are also people who don't get much exposure at any time of the year due to their circumstances - for example, they might work at night or they might be unable to get outdoors every day. Sunlight shining through a window is usually insufficient to make vitamin D. People with darker skin pigmentation can also find it difficult to maintain levels of vitamin D.

Foods that contain lots of vitamin D are often not eaten every day, so many people supplement their diet with tablets that contain their daily dose. NHS guidelines are that in general everyone over age 5 should take 10mcg (400UI) Vitamin D per day from October - March. Those people who see very little direct sunlight or who find it difficult to maintain their vitamin D levels should take the supplement all year round. NOTE some people take calcium tablets that are already supplemented with vitamin D, so in that case need no further supplementation.
That said, individuals can be very variable in how much Vitamin D supplement they need so if in doubt see your doctor.

Does vitamin D protect us from COVID-19? So far the answer is maybe but there is not enough evidence to strongly support the suggestion. Studies are ongoing. However as already discussed there is plenty of evidence to suggest that you need to ensure that you get enough vitamin D regardless of COVID-19. Keep your levels up and you will benefit in lots of ways - if we find in the future it is good for prevention of COVID-19 infection, so much the better.[/et_pb_text][/et_pb_column][/et_pb_row][/et_pb_section]


The Host, its Microbiome and their Aspergillosis.

[et_pb_section fb_built="1" _builder_version="4.16" global_colors_info="{}" theme_builder_area="post_content"][et_pb_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 _builder_version="4.16" background_size="initial" background_position="top_left" background_repeat="repeat" global_colors_info="{}" theme_builder_area="post_content"]

Infection

For a very long time, medical science has assumed that infectious diseases are caused by the presence of a pathogen and weakness in the infected person or the host as it is often known, which allows the pathogen to grow and infect. The weakness could be for example a weakened immune system caused by a genetic illness or immune-suppressive treatment such as is used for transplant patients.

We assumed that inside our bodies there was mostly a sterile environment, and one reason we might become ill could be a pathogen getting into one of those sterile areas and then growing uncontrollably. One of those sterile area's was our lungs - so 30-40 years ago most would have concluded that aspergillosis was caused by an Aspergillus spore getting deep into the lungs of the recipient and then managing to grow.

 

Microbiome

Around the year 2000 we started to be able to look at our internal spaces in more detail and identify any microbes that might be present, What was found was a surprise, for example, we could find many microbes; bacteria, fungi and virus' growing in our lungs without causing any harmful symptoms. It is common to find Aspergillus fumigatus (ie the pathogen that we assume causes aspergillosis most of the time) present in the lungs of most of us where it lives without causing aspergillosis. How is that possible and what is the difference between that situation and the allergy & infections caused in the lungs of an aspergillosis patient?

We quickly learned that microbes could establish harmless communities, living in harmony with each other and with our immune system. This community was named the human microbiome and included all microbes who live within and on us. Huge numbers live in our gut, especially in our large intestine which is the last section of our digestive system to receive our food before it is ejected via the rectum.

 

Our Microbial Friends

It has emerged then that A. fumigatus can be controlled by its microbial neighbours (our microbiome) working in a tightly controlled partnership with our immune system.

The fungal pathogen interacts with the host to calm the host's response to the pathogen and uses parts of the host's immune system to do this. In this way the host and pathogen tolerate each other and do little harm, however, it has been demonstrated that if parts of the host's fungal recognition system are not working then the host will initiate an aggressive inflammatory response. This is not unlike the situation in ABPA where one of the major problems is the host over-responding to the fungus.

We are also given an example of the microbiome controlling the host's immune response to a fungal pathogen. Resistance to infection can be increased by the microbial population in the gut sensing a signal - presumably in food ingested by the host. This means that environmental factors can influence the rejection of a pathogen by its microbial neighbours - the message we might take from this is to look after our gut microbiome, and it will look after us. This also holds for the microbes in our lungs, where we have seen differences in the types and location of bacteria in the upper and lower airways that seem to be consistent with the microbiome controlling inflammation - the authors speculate that we need to look at what happens when we challenge these lung microbiotas with a highly inflammatory pathogen such as Aspergillus fumigatus.

The microbiome is also self-regulating as long as it is kept healthy. Bacteria can attack fungi, fungi can attack bacteria in an ongoing battle for food. Host pathogens can be eliminated completely from the microbiome by other microbes.

Different microbiomes in a different part of our body can interact and control diseases such as asthma (ie. lung microbiome interacting with gut microbiome) - so what you eat may influence the microbes in your gut microbiome and that can have an impact on your asthma, for example.

 

I must warn you that lots of the observations mentioned above are based on very few experiments so far, and mostly on animal model systems and Candida rather than Aspergillus so we must be cautious in our interpretation with regard to aspergillosis, however there are a few take-home messages worth bearing in mind.

  1. Most healthy people seem to have very healthy, highly diverse microbiomes - so look after yours with a well-balanced diet containing lots of plant material, lots of fibre
  2. Researchers seem to be turning our assumptions of what infection is on its head - they seem to be saying that inflammation causes infection, rather than infection causes inflammation.
  3. What you eat can have a direct impact on the amount of inflammation your body uses in response to what it perceives as a pathogen.

It can't be that diseases like asthma and ABPA are caused by an unhealthy microbiome can it?

Current research seems to be suggesting that it may play a part, so the value of someone with aspergillosis doing what they can to promote a healthy community of microbes within themselves cannot be overstated.

What should I eat for a healthy microbiome? (BBC website)

Human Microbiome Project

Microbiome-mediated regulation of anti-fungal immunity
[/et_pb_text][/et_pb_column][/et_pb_row][/et_pb_section]