Walk and paint yourself back to health & wellbeing

One of the subjects discussed at our online weekly patient & carer support meeting for the National Aspergillosis Centre in Manchester, UK this week was the importance of maintaining our health & wellness so that we may maintain our best possible quality of life regardless of having a chronic infection.

Exercise is difficult when you have little energy, and one or two participants compared this to being given just a few teaspoons of energy that have to be eeked out carefully over the course of the day to ensure that everything that needed to be done was done. One person commented that some days they only wake up with one teaspoon of energy!

A little gentle exercise every day could play a major role in maintaining your health & wellness and can help with energy too if you keep it up. Over time it will help you breathe and prevent muscle loss.

We can all get great advice from our GP's or Physiotherapists on specific exercises we can do in the home, but one patient mentioned that she had successfully worked their way back to fitness and enjoyment using the walking groups provided by the UK charity 'Walking for Health' who have a network of walking groups led by responsible trainers throughout the UK, specifically for people with asthma.

Well worth a try!

Another aspect of health & wellbeing is emotional health. It can be easy to become isolated and there is only so much entertainment to be found on TV. Another member of the support meeting suggested one of the many Zoom groups that have been set up to teach art!

There are many options online and many different media you can work with.

For example:

https://adult.art-k.co.uk/adult-zoom-classes/

https://www.artcoursework.com/class-courses/free-beginners-learn-to-draw-and-paint-course/

https://www.eventbrite.co.uk/d/online/free--arts--classes/?page=1

 

Good luck! Doing something is always better than doing nothing.


Is it COVID or just a cold?

https://www.youtube.com/watch?v=kTTMMmZfHmQ


When will there be a vaccine for aspergillosis?

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[et_pb_column type="4_4"][et_pb_text admin_label="Text"]Why are there no vaccines for fungal infections?

Unfortunately, our understanding of immunity to fungi lags far behind our understanding of bacterial or viral infections. There are currently no vaccines available for any fungal infection, but several groups around the world are working towards designing and getting them approved for use in clinics.

The fungal vaccine currently nearest to the finish line is called NDV-3A. It is designed to boost immunity against Candida and prevent vaginal thrush (yeast infection), which will be of great comfort to people suffering from recurrent thrush (4+ infections per year).

Current efforts to produce an Aspergillus vaccine are mainly aimed at preventing invasive aspergillosis, which kills around 200,000 people per year worldwide. Many of these infections could be prevented if we had a way to vaccinate high-risk patients before starting medical treatments that lower their immunity (for example chemotherapy, transplants, strong steroids). However, it is very difficult for a person who already has an existing immunodeficiency to mount an effective immune response.

Efforts are also being made to develop a 'pan-fungal' vaccine, which would protect against many fungal pathogens at once.

 

What aspergillosis vaccines are in the pipeline?

Several approaches to designing an Aspergillus vaccine have been tried and are starting to achieve promising results in mice. Some researchers have tried injecting purified (recombinant) single proteins, while others have tried using complex mixtures made by fragmenting Aspergillus cell wall matter.

Earlier this year, staff at the Center for Vaccines and Immunology (University of Georgia, USA) tried using a recombinant protein called AF.KEX1, which is naturally found on the surface of Aspergillus cells. Vaccinated mice showed a good antibody response and grew smaller amounts of Aspergillus in their lungs. Importantly, they were less likely to die even if their immune systems were suppressed using corticosteroids.

 

Will they be used to prevent CPA / ABPA in future?
Even after a vaccine for invasive aspergillosis has been approved, more work will be needed to find out whether it is also effective in preventing CPA and/or ABPA. It is much harder to predict who is at risk of developing chronic forms of aspergillosis because they are so rare even among people who have a known risk factor – most people with COPD do not develop CPA, and most people with asthma do not develop ABPA. This make it very hard to decide who should be vaccinated. It also makes it difficult to recruit enough of the right patients to run a meaningful clinical trial.

 

So how long?

As with many medical conditions, a prevention is better than a cure. But this is a long-term goal and it is impossible to predict with any accuracy when an Aspergillus vaccine will be available to patients.

We might hope to see some early-stage trials in humans in the next 3-5 years, but there is no guarantee that any of the current candidates will be effective or safe enough in humans to justify larger trials or be rolled out in clinics.

On the other hand, the COVID-19 pandemic has generated an enormous amount of public interest and new technologies for vaccination. Multiple COVID-19 vaccines were developed and brought to the public on a timescale that could scarcely be imagined even just 5 years ago. We may find that the vaccine development landscape changes beyond recognition in the near future and brings the prospect of an Aspergillus vaccine closer than we thought.

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National Aspergillosis Centre (NAC) Patient & Carer Support meeting: July 2021

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[et_pb_column type="4_4"][et_pb_text admin_label="Text"]Our support meetings are informal and designed to provide participants to chat, to ask questions and to listen to some expert opinions on a variety of subjects related to aspergillosis in some way - you can often ask questions too. No-one need go away without their questions having an answer from the NAC team.

This month we had a talk from University of Manchester & Manchester Fungal Infection group (MFIG) researcher Jorge Amich Elias on his research into new ways to treat aspergillosis - this one even has a medication ready to go!

View full Video here

We also had an informative talk on the important subject of Power of Attorney from NAC team member Lauren Amphlett.

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Palliative Care - Not What You Might Think

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Chronically ill people are occasionally asked to consider entering a period of receiving palliative care. Traditionally palliative care was equated with end of life care, so if you are offered palliative care it can be a daunting prospect and it is entirely natural to think that your healthcare workers are preparing you for the final stages of your illness. That is not the case.

End-of-life care usually revolves around making what time you have left as comfortable at possible. Increasingly palliative care does much more than that - the NHS information page on End-of-life care includes the following exerpt:

End of life care includes palliative care. If you have an illness that cannot be cured, palliative care makes you as comfortable as possible, by managing your pain and other distressing symptoms. It also involves psychological, social and spiritual support for you and your family or carers. This is called a holistic approach, because it deals with you as a "whole" person, not just your illness or symptoms.

Palliative care is not just for the end of life – you may receive palliative care earlier in your illness, while you are still receiving other therapies to treat your condition.

When we have spoken about palliative care to our patient groups here are some of the comments:

Palliative care can be very helpful. One individual I have worked with was very weak when we first met a few years ago after a very active life. He could barely speak. He was referred to a local palliative care team at a hospice where they were able to offer a variety of activities, holistic treatments and socialisation. He is now much better and a very chatty man, moving with a much better quality of life.

 they introduce calm and certainty into a situation where neither are usually present.

I can’t recommend being referred to palliative care enough. Please don’t assume palliative care and end of life care is the same.

Palliative care is delivered by a range of medical professionals so you can make enquiries via your GP or hospital specialist. It can be delivered in a number of settings - in a couple of examples we heard about recently a local hospice provided support to achieve personal goals to live well - for the patient and their carer and family. It made a huge difference to the lives of the people concerned.

Hospice UK
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National Aspergillosis Centre (NAC) Patient & Carer Support meeting: June 2021

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Our support meetings are informal and designed to provide participants to chat, to ask questions and to listen to some expert opinions on a variety of subjects related to aspergillosis in some way - you can often ask questions too. No one need go away without their questions having an answer from the NAC team.

This month we had a talk from National Aspergillosis Centre Team's Graham Atherton with an update on the COVID pandemic and its implications for aspergillosis patients in the UK, Beth Bradshaw of NAC talks about lung function tests and Chris Harris gives us our weekly exercises for 10 mins.

View full Video here
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COVID Vaccination Side Effects

[et_pb_section fb_built="1" admin_label="section" _builder_version="4.16" global_colors_info="{}" theme_builder_area="post_content" custom_padding="7px||7px||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"]Now that the rollout of the second COVID vaccination (using the Pfizer/BioNTech and Oxford/AstraZeneca vaccines) are well underway in the UK attention in our aspergillosis patient communities has turned to the potential for side effects caused by these medications.

Most people suffer few or no side effects from either vaccine other than having a slightly sore arm for a day or two or feeling a few aches. Doctors are recommending that we take paracetamol to relieve those symptoms.

The UK government has now published more detailed information on side effects and all three vaccinations currently in use in the UK (a third vaccine named Moderna has recently started to be used). You can read this information at the links below:

AstraZeneca

Pfizer/BioNTech

Moderna

You can also report any suspected side effect.

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Aspergillosis monthly patient & carer meeting

National Aspergillosis Centre Community Awareness Research Education Support

????Don't forget that 1pm this Friday (9 April) is our monthly patient & carer meeting.

Hosted by NAC staff, we will present an update on Covid-19, discuss any changes to our service and give a talk/presentation on an aspergillosis related topic.

Discussion and questions are actively encouraged, and this is another great opportunity to meet other patients and carers with aspergillosis.

There are 3 ways to watch:

 

1) Join the meeting via Zoom:
Code: 784131

2) Watch live on Facebook:

www.facebook.com/groups/aspergillussupport
3) Catch up on our YouTube channel: www.youtube.com/channel/UCrHw9jJhvLXnzcywG02UTwg

 

 


COVID Vaccination - hesitating?

It is becoming clear that there are a small number of people in all walks of life who are hesitating before having a COVID vaccine - even if they have high-risk jobs! One common reason for this seems to be that they are concerned that the available vaccines have been developed too quickly and therefore must be less safe in some way.
This is actually incorrect. In the past, we would have had to go through many more steps (eg isolate active virus, grow it in the lab, both of which could take years) that we no longer have to because of the new science we are following. Because we no longer have to go through those steps we save all that time - and the vaccines are safer to produce and use because we no longer use active virus so more time is saved.
The 'new science' isn't actually that new either - this type of vaccine has been in development for decades in preparation for exactly this type of pandemic.
Read more about why we have been able to produce these highly effective vaccines so quickly, yet do it safely here https://www.theguardian.com/.../ten-reasons-we-got-covid...
The message is clear - the risk to your health caused by not being vaccinated for COVID-19 far exceeds any risk to your health that may be caused by being vaccinated. This situation is likely to be true for years ahead, the problem won't go away if you are not vaccinated as there will likely be variants circulating for some time yet, and there is already talk of an annual booster vaccination to protect us from those as well. Get yourself protected!

What is an MDT?

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Stock image illustrating an MDT, 5 people around a table. Cogs are above their heads.

I have been told I am to be discussed at MDT, what does this mean?

Don't panic! Most patients with complex conditions like aspergillosis will hear the term 'MDT' at some point in their journey to diagnosis or afterwards.

But what does it mean?

MDT stands for Multidisciplinary Team and is often associated with the care of patients with cancer or suspected cancer; however, MDTs are also used to inform the decision-making process in the care of patients with other conditions, particularly those that are complex.

Okay, so who is in this team, and what do they do?

This team is far more impressive than any sporting team out there. A Multidisciplinary Team brings together a range of clinicians and specialists, all of whom bring their professional expertise in diagnosis, treatment options, and individual patients' overall care - ensuring a joint approach to care.

In the context of the aspergillosis MDT, the team meet once a week, and the core members are:

  • Doctors
  • Nurses
  • Physiotherapists
  • Pharmacists
  • Laboratory staff

One of the doctors or nurses in attendance will always be the referring clinician. This ensures a patient-centred approach as there is an advocate for the patient who knows their personal circumstances and wishes.

What do they discuss?

This is dependent on the individual case. The team will review (and where possible compare) CT scans, X-rays, laboratory results and medications. They will discuss referral letters, look at the patient history and take into account discussions with the patient.

Does this delay my treatment or diagnosis?

In short, no.

Being told you need to be discussed at MDT may feel like it is delaying treatment or answers; however, MDTs are held weekly and are an essential element in managing complex conditions to ensure the best possible care and treatment in line with national guidance and best practice.

Will I get to know the outcome?

Yes, the team's conclusions and recommendations will be fed back to you at your next appointment, or earlier if necessary, for example, if you need to change medication or have more tests.

When will I be discussed at MDT?

Patients can be referred to the MDT at any point in their journey, be it while a diagnosis of aspergillosis is being considered, or if changes occur and alternative treatment options need to be discussed.

 

You can find more detailed information produced by the NHS on MDTs here.

If you want to access additional support materials about aspergillosis, click here.
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