NAC CARES Team Joins European Lung Foundation (ELF) Patient Organisation Network
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The National Aspergillosis CARES Team are excited to announce its membership in European Lung Foundation (ELF) Patient Organisation Network. This collaboration marks a milestone in the team's commitment to enhancing the lives of individuals affected by aspergillosis.
Founded in 2000 and working in partnership with the European Respiratory Society (ERS), ELF is a patient-led organisation that works internationally to bring patients and the public together with healthcare professionals to improve lung health and advance diagnosis, treatment, and care.
The ELF Patient Organisation Network is a hub for respiratory patient organisations throughout Europe, fostering knowledge exchange, collaboration, and advocacy initiatives to improve respiratory health and well-being across the continent. Membership of the network provides the CARES Team with access to invaluable resources, expertise, and opportunities to positively impact the lives of those living with aspergillosis.
As an active participant in this network, the NAC CARES Team will contribute expertise, raise awareness at both national and European levels, and help drive positive change. In addition to knowledge sharing and advocacy, the ELF Patient Organisation Network offers opportunities for networking and collaboration. By connecting with like-minded organisations, the team can establish partnerships, share experiences, and collaborate on joint initiatives to create a more supportive environment for individuals living with aspergillosis in Europe.
You can read more about ELF here: https://europeanlung.org/en/
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NAC CARES Virtual Challenge - We've Made It From Lands End to John O'Groats!
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We're pleased to announce that the NAC CARES Team has successfully completed our virtual journey from Lands End to John O'Groats. Over the past few months, our team has walked, cycled, and run an incredible total of 1744km (1083.9 miles)! Starting on February 1st, World Aspergillosis Day, we set ourselves 100 days to complete the challenge, but, we completed it ahead of schedule, on May 12th, 5 days sooner than anticipated.
Our virtual expedition has been a grand tour of the UK, from the stunning cliffs of Lands End in Cornwall to the rugged shoreline of John O'Groats in Scotland. We virtually journeyed through England's diverse landscape, passing through picturesque countryside, vibrant cities, and historic towns. From the iconic signpost at Lands End to the bustling streets of Bradford, the rich cultural heritage of Huddersfield, the dramatic landscapes of the Peak District National Park, the green spaces and cultural landmarks of Sheffield, and the legendary Sherwood Forest - each place a unique story in our broader narrative.
Crossing the border into Scotland, we continued our journey through the Scottish Highlands, with its breathtaking panoramas and rich history. We passed through the charming village of Fort Augustus, navigated around the famous Loch Ness, and made our way through the Cairngorms National Park, known for its diverse ecosystems, unique flora, and rare wildlife.
Our journey culminated at John O'Groats, traditionally acknowledged as the extreme northern point of mainland Britain, marking a triumphant conclusion to our endeavour.
But the importance of this journey extends far beyond the physical accomplishment. This effort was a symbol of unity, resilience, and determination, resonating with the values we uphold in our battle against fungal infections. We embarked on this challenge to raise much-needed funds and awareness for the Fungal Infection Trust, an organisation dedicated to advancing research, promoting awareness, and improving treatments for individuals affected by fungal infections.
We want to express our gratitude for all the support we have had throughout this journey. However, the fight against fungal infections doesn't stop here.
If you have not yet made a contribution or if you feel moved to give more, please do so via our fundraising page:
https://www.justgiving.com/campaign/LEJOG-for-Aspergillosis
Thank you for your part in this journey and for standing alongside us in this vital cause. We celebrate the difference we've made together and anticipate the positive impacts we will continue to make in the future!
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Charity Walk Update: Nearing the Finish Line
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We're back with what will probably be our penultimate updater on our virtual Lands End to John O'Groats challenge, where we aim to raise money for the Fungal Infection Trust. Our team has continued to walk, run and cycle the virtual challenge and has now covered an impressive 1534.61km (953.56 miles), leaving just 209.59km (130.23 miles) until we reach our destination.
Our team is now on the final stretch, heading towards Inverness before following the coast up to John O'Groats. Along the way, we've passed the famous Loch Ness, a large, deep, freshwater loch extending approximately 37 kilometres southwest of Inverness. Known for its dramatic scenery, Loch Ness is also famous for the legendary Loch Ness Monster, affectionately known as "Nessie."
Interestingly, in 2008, the late American scientist and lawyer Robert Rines, who spent decades searching for Nessie, concluded that the Loch Ness Monster was likely extinct. Rines had captured images in the 1970s that some believed to be evidence of the creature, but subsequent searches yielded no concrete evidence of Nessie's existence.
Our journey has also taken us through the picturesque Fort Augustus, a charming village on the banks of the Caledonian Canal and near the south-western end of Loch Ness. This beautiful area is known for its scenic surroundings and the impressive Fort Augustus Abbey, a former Benedictine monastery.
We've also ventured through the captivating Cairngorms National Park, the UK's largest national park, which is home to rare wildlife such as golden eagles, capercaillie, and wildcats. The park boasts five of the UK's six highest mountains, offering stunning landscapes and diverse ecosystems.
As we approach the end of our challenge, we remain grateful for your support and enthusiasm. Together, we will make a difference in the fight against fungal infections. Stay tuned for or final update as we make the final push towards the finish line, and don't forget to donate via the link below:
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COVID-19 News
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COVID-19 App no longer in use
The NHS COVID-19 app, which alerted close contacts of a positive case and provides the latest health advice about the virus, closed on 27 April 2023.
Over the past year, the success of the vaccination programme, increased access to treatments and high immunity in the population has enabled the government to target its COVID-19 services, meaning the app is no longer needed. The knowledge, technology and lessons learnt from the app will be used to help inform planning and response to future pandemic threats.
It is important that people continue to follow the latest guidance to protect themselves and others:
This includes reporting NHS lateral flow test results on GOV.UK. Those eligible for COVID-19 treatment must report their result so the NHS can contact them about treatment.
COVID-19 vaccination spring programme
The 2023 spring coronavirus (COVID-19) booster programme is now underway. A spring booster dose is being offered to:
- adults aged 75 years and over
- residents in a care home for older adults
- individuals aged 5 years and over who are immunosuppressed
Those eligible can book their vaccination on the National Booking Service or NHS App.
The last date for the public to book spring boosters will be 30 June 2023.
The offer of a first and second dose of the COVID-19 vaccine will also come to an end for many people on 30 June. After this date, the NHS offer will become more targeted to those at increased risk, usually during seasonal campaigns.
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Unblocking Airways: New approaches to preventing mucus plugs
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Excess mucus production is a common problem in people with Allergic Bronchopulmonary Aspergillosis (ABPA), and chronic pulmonary aspergillosis (CPA). Mucus is a thick mixture of water, cellular debris, salt, lipids, and proteins. It lines our airways, trapping and removing foreign particles from the lungs. The gel-like thickness of mucus is caused by a family of proteins called mucins. In individuals with asthma, genetic changes to these mucin proteins can thicken the mucus, making it more difficult to clear from the lungs. This thick and dense mucous builds up and can lead to mucus plugs, blocking the airways and causing breathing difficulties, wheezing, coughing, and other respiratory symptoms.
Doctors usually treat these symptoms with inhalable medications such as bronchodilators and corticosteroids to open the airways and reduce inflammation. Mucolytics can also be used to break down mucus plugs, but the only available medication, N-Acetylcysteine (NAC), is not very effective and can cause unwanted side effects. While current treatments can help manage symptoms, there is a need for effective and safe treatments to directly address the issue of mucus plugs.
To address this issue, 3 approaches are being explored:
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- Mucolytics to dissolve mucus plugs
Researchers at the University of Colorado are testing new mucolytics such as tris (2-carboxyethyl) phosphine. They gave this mucolytic to a group of asthmatic mice experiencing inflammation and excess mucus production. After treatment, mucus flow improved, and the asthmatic mice could clear mucus just as effectively as the non-asthmatic mice.
However, mucolytics work by breaking the bonds which hold mucins together, and these bonds are found in other proteins in the body. If the bonds are broken in these proteins, it could lead to unwanted side effects. Therefore, further research is needed to discover a drug that will only target the bonds in mucins, reducing the risk of side effects.
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2. Clearing crystals
In another approach, Helen Aegerter and her team at the University of Belgium are studying protein crystals which they believe drive mucus overproduction in asthma. These crystals, known as Charcot-Leyden crystals (CLC’s) cause mucus to become thicker, therefore harder to clear from the airways.
To address the crystals directly, the team developed antibodies that attack the proteins in the crystals. They tested the antibodies on mucus samples collected from individuals with asthma. They found that the antibodies effectively dissolved the crystals by attaching themselves to the specific regions of the CLC proteins that hold them together. In addition, the antibodies dampened inflammatory reactions in mice. Based on these findings, the researchers are now working on a drug that could have the same effect in humans. Aegerter believes that this approach could be used to treat a variety of inflammatory diseases that involve excessive mucus production, including sinus inflammation and certain allergic reactions to fungal pathogens (such as ABPA).
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- Preventing excess secretion of mucus
In a third approach, pulmonologist Burton Dickey of the University of Texas is working to prevent mucus plugs by reducing the overproduction of mucus. Dickey's team identified a specific gene, Syt2, that is only involved in excessive mucus production and not in normal mucus production. To inhibit excess mucus production, they developed a drug called PEN-SP9-Cy that blocks Syt2's action. This approach is particularly promising as it targets mucus overproduction without interfering with the vital functions of normal mucus. Normal mucus production plays a critical role in protecting and maintaining the health of the respiratory and digestive systems. Although the initial results are promising, further research is necessary to evaluate the efficacy and safety of these drugs in clinical trials.
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In summary, mucus plugs present uncomfortable symptoms in ABPA, CPA and asthma. Current treatments focus on symptom management rather than directly addressing reduction or removal of mucus plugs. However, researchers are exploring 3 potential approaches, involving mucolytics, clearing crystals, and preventing excess mucus secretion. Additional research is required to confirm their effectiveness and safety, but approaches have shown promising results and may in future be one way we can prevent mucus plugs.
Further information:
Phlegm, mucus and asthma | Asthma + Lung UK
How to loosen and clear mucus
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Lung and Chest Pain: Perception and Mechanisms in the Absence of Nerves
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When we think of pain, we often associate it with injury or damage to a particular part of our body. However, the experience of pain is not always straightforward, especially when it comes to the lungs, as they have very few nerve endings compared to other parts of the body. This post aims to shed light on the mechanisms of lung and chest pain, including cardiac causes, and how lung pain is felt despite having very few nerves.
The Perception of Pain
Pain serves as a protective mechanism that alerts the body to potential harm. It is a complex process involving the nervous system, which includes peripheral nerves, the spinal cord, and the brain. Pain perception typically begins with the activation of nociceptors, which are specialised nerve endings that initiate the response to pain from stimuli. These nerve endings transmit signals through the peripheral nerves to the spinal cord and, ultimately, to the brain, where the sensation of pain is processed and perceived.
The Autonomic Nervous System
The autonomic nervous system is part of the nervous system that controls involuntary functions within the body, such as heart rate, blood pressure, digestion, breathing, and temperature regulation. It operates mostly unconsciously, allowing your body to automatically respond and adapt to changes in the environment and maintain a stable internal state, known as homeostasis. The sympathetic and parasympathetic nerves are part of the autonomic nervous system, which controls involuntary functions in your body.
The sympathetic nerves are responsible for the 'fight or flight' response, preparing your body for action during times of stress. They increase heart rate, blood pressure, and breathing rate.
The parasympathetic nerves help your body relax and recover, promoting the rest and digest response. They lower heart rate and blood pressure and facilitate digestion. Together, these nerves help maintain balance in your body, ensuring it responds appropriately to different situations.
Lung Anatomy and Nerve Distribution
Unlike the skin and muscles, the lungs have a relatively sparse distribution of nerve endings. The majority of nerves in the lungs are part of the autonomic nervous system. The lungs are primarily innervated by the vagus nerve, which carries sensory information from the lungs to the brain. The sympathetic and parasympathetic nerves regulate bronchial smooth muscle tone and mucus secretion.
Pain in the Lungs and Chest: Mechanisms and Causes
Despite having very few nociceptors (pain receptors), it is still possible to experience pain in the lungs and chest. This pain can be a result of various factors, including:
- Pleural irritation: The lungs are surrounded by a double-layered membrane called the pleura. The pleura contains nociceptors that can become irritated by inflammation or infection, resulting in pleuritic pain – a sharp, stabbing sensation felt in the chest, which typically worsens with deep breathing or coughing.
- Referred pain: The brain can sometimes misinterpret signals from the lungs or pleura, perceiving pain in nearby areas such as the chest, back, or shoulders. This is known as referred pain and can result from lung conditions like pneumonia, pleurisy, or pulmonary embolism.
- Bronchospasm: Constriction of the bronchial muscles can lead to a sensation of chest tightness and difficulty breathing, which may be perceived as pain.
- Lung tissue damage: Although the lung tissue itself has few nociceptors, severe inflammation or infection can cause damage to the surrounding tissues, leading to the perception of pain.
- Cardiac causes: Chest pain can also be a symptom of heart-related issues, such as angina or a heart attack. Pain from cardiac causes is often described as a pressure, tightness, or squeezing sensation in the chest. It can sometimes radiate to the arms, neck, jaw, or back. It is essential to seek immediate medical attention if you suspect your chest pain is heart-related.
Please note the above list is not exhaustive. If you are experiencing pain that is new for you, has not been investigated or is in any way different from your usual symptoms - please seek medical advice.
Further reading on lung conditions not related to aspergillosis can be found via the following resources:
- British Lung Foundation: A UK-based charity that offers extensive information on various lung conditions, their symptoms, and available treatments. Visit their website at https://www.blf.org.uk/ for patient guides and support.
- Asthma UK: A charity focused on helping people with asthma understand and manage their condition. Their website (https://www.asthma.org.uk/) offers information on asthma symptoms, triggers, treatments, and personal stories from patients.
- COPD Foundation: A non-profit organisation dedicated to improving the lives of those affected by chronic obstructive pulmonary disease (COPD). Their website (https://www.copdfoundation.org/) provides a wealth of information on COPD, including educational materials, management strategies, and support groups.
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NAC CARES Virtual Challenge - 803 miles (1292.41 km) down
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It's been a couple of weeks since our last update, and we're excited to share our progress on our team's virtual Lands End to John O'Groats challenge. As most of you may know, we embarked on this journey to walk, cycle, and run the length of the UK to raise money for the Fungal Infection Trust. Despite the Easter holidays, we haven't stopped and are mostly being fueled by Easter eggs right now!
We have now covered a total of 1292.41km (802.6 miles), which is 74% of the distance, in only 67% of the planned time of 100 days. This puts us well ahead of schedule, with just 451.79km (280.6 miles) remaining in our challenge.
Currently, we are in Scotland and approaching the iconic Forth Bridge. Along the way, we have passed several historic landmarks, including:
Hadrian's Wall: A UNESCO World Heritage Site, this ancient Roman fortification stretches for 73 miles (117 km) across the North of England from the west coast of Cumbria near the Solway Firth to the east coast near the River Tyne in Tyne and Wear. Constructed in AD 122 under Emperor Hadrian's rule, the wall was designed to separate Roman Britain from the barbarian north and served as a military defence line.
Edinburgh Castle: Perched on an extinct volcano, this historic fortress dominates the skyline of Scotland's capital city. With its origins dating back to the 12th century, the castle has been a royal residence, a military garrison, and a prison over the years. Today, it serves as a popular tourist attraction and houses the Scottish Crown Jewels and the Stone of Destiny, also known as the Stone of Scone or the Coronation Stone, which is a historic and symbolic block of red sandstone, measuring approximately 26 inches (66 cm) in length, 16 inches (40 cm) in width, and 11 inches (28 cm) in depth.
Our accelerated pace is down to our team's hard work and dedication. We are making excellent progress in our challenge, but we still have a significant distance to cover to reach John O'Groats and our fundraising goal. We are grateful for your support and are confident that, together, we will make a difference in the fight against fungal infections.
Thank you for following us on this journey; we look forward to sharing more updates with you soon. You can donate via the link below.
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The Benefits of Peer Support
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Living with chronic and rare conditions such as chronic pulmonary aspergillosis (CPA) and allergic bronchopulmonary aspergillosis (ABPA) can be a daunting experience. The symptoms of these conditions can be severe and have a significant impact on a person's daily life. The journey can be lonely and isolating, and it's common to feel like no one understands what you're going through. This is where peer support can be incredibly valuable.
Peer support is a way for people with a shared experience to connect and share their stories, advice, and coping strategies. It can be offered in various forms, including online support groups, peer mentoring programs, and in-person support groups. It allows people to feel understood, validated, and supported in a way that other forms of support cannot offer.
At the National Aspergillosis Centre (NAC), we understand the importance of peer support for people living with aspergillosis. While we offer advice and guidance on how to manage your condition, we recognise that much of the support comes from those with a lived experience of the condition.
Our virtual patient and carer support meetings are an excellent example of peer support in action. These meetings are hosted on Microsoft Teams twice a week and are open to everyone, not just those who are patients of NAC. These meetings provide a safe and supportive space for people to connect with others who understand what they're going through. They allow people to share their experiences, ask questions, and learn from others who have lived with the condition for a longer period.
Through these meetings, patients gain insight into coping mechanisms and strategies that help others live as normal a life as possible with their condition. We have seen many of our patients build lasting friendships with people who understand what they're going through.
So, if you are living with any type of aspergillosis, our peer support channels can be a valuable resource. Connecting with others who share your experience can provide benefits that are difficult to achieve through other forms of support. Our virtual patient and carer support meetings are an excellent place to start, and we encourage you to join us and see the benefits of peer support for yourself.
You can find out the details and sign up for our meetings by clicking here.
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2023 Bronchiectasis Patient Conference
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The 2023 Bronchiectasis Patient Conference, organised by the European Lung Foundation, is a popular event for patients each year. This year we asked two of our patients who attended to share their personal experiences and thoughts on the conference, highlighting its importance and impact.
Our patients reported that the conference attracted 1,750 registrations from 90 countries, and during an online questionnaire, 47% of participants identified as living with bronchiectasis. Dr Fiona Mosgrove's presentation on "Living with Bronchiectasis" provided valuable insights on lifestyle, nutrition, and mental health, recommending two books for further reading.
Prof. James Chalmers discussed a potential new treatment involving an anti-pseudomonas monoclonal antibody, demonstrated through engaging video clips. The conference also covered other topics such as Phage therapy, bronchiectasis through different life stages, and the importance of end-of-life care discussions.
Both patients found the conference to be an informative and valuable experience, despite facing some technical difficulties and unclear presentations due to those difficulties. They appreciated Dr Chalmers' well-paced talk on new treatments, as well as Dr Mosgrove's discussion on mental health and airway clearance techniques. One patient noted that while coexisting diseases like chronic obstructive pulmonary disease (COPD) and asthma were mentioned, there was no reference to Aspergillosis. The conference emphasised the importance of daily airway clearance, exercise, relaxation, and ongoing research for more effective treatments.
In summary, both patients found the 2023 Bronchiectasis Patient Conference to be an enriching experience, providing valuable insights and practical takeaways for managing the condition. Despite some technical issues, the conference succeeded in raising awareness and fostering a sense of community among people living with bronchiectasis.
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NAC CARES Virtual Challenge – 587.5 miles (945.11 km down)
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We are excited to share with you an update on our team's virtual Lands End to John O'Groats challenge. As you may know, our team is walking, cycling, and running the length of the UK to raise money for the Fungal Infection Trust. We are proud to announce that we have completed 54% of the challenge, which is equivalent to 945.11km or 587.5 miles.
Currently, we are virtually passing through the breathtaking Yorkshire Dales National Park, having already passed through several noteworthy locations on our journey. These include:
- Bradford: A vibrant city located in West Yorkshire, known for its industrial history and impressive Victorian architecture.
- Huddersfield: A bustling town with a rich cultural heritage, including notable landmarks such as Castle Hill and St. George's Square.
- The Peak District National Park: A stunning area of natural beauty spanning across several counties, including Derbyshire, Cheshire, and Staffordshire. It's famous for its dramatic landscapes, rugged moorlands, and picturesque villages.
- Sheffield: A vibrant city known for its steel industry, green spaces, and cultural landmarks such as the Millennium Gallery and Winter Garden.
- Sherwood Forest: A legendary location associated with Robin Hood and his band of merry men, known for its ancient oaks and rich wildlife.
- Rufford Abbey: A former Cistercian monastery located in Sherwood Forest, which is now a popular tourist attraction featuring a country park and gardens.
- Sherwood Pines Forest Park: A sprawling woodland park with a range of outdoor activities, including cycling, walking, and a Go Ape treetop adventure course.
- Robin Hood's Wheelgate Park: A family-friendly theme park featuring a range of rides, attractions, and live shows.
- Nottingham: A historic city with a rich cultural heritage, including landmarks such as Nottingham Castle, the Old Market Square, and the Lace Market.
We are thrilled to have made it this far, and we are well ahead of schedule. We are grateful for your continued support, but we still have a long way to go to reach our fundraising goal and John O' Groats; we are confident both will be achieved, and with it, we will make a difference in the fight against fungal infections.
Thank you for joining us on this journey, and we look forward to sharing more updates with you soon. You can donate via the link below.
https://www.justgiving.com/campaign/LEJOG-for-Aspergillosis
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