To mark World Aspergillosis Day on 1 February, members of the ELF Aspergillosis Patient Advisory Group (PAG) shared their experiences. They explained why they joined the PAG, what they would like people to know about aspergillosis and their hopes for the future.
We are one of the newest ELF PAGs. The Aspergillosis PAG was set up in 2020 when ELF got involved in a new research collaboration.
Aspergillosis is a rare fungal lung disease. There are several different types of aspergillosis. It is usually caused by breathing in the ‘aspergillus’ fungus. Aspergillosis can cause breathing difficulties and damage the lungs. Some people develop aspergillosis without any previous history of lung disease. Other people may have aspergillosis alongside other conditions such as asthma, sarcoidosis and bronchiectasis.
Our PAG is working with researchers and doctors from the Chronic Pulmonary Aspergillosis Network (CPAnet) to improve diagnosis and treatment for chronic pulmonary aspergillosis, a type of aspergillosis.
The PAG brings together people from across Europe who are all living with aspergillosis. We currently have 14 members, based in Belgium, Denmark, France, Portugal, the Netherlands, Norway, the United Arab Emirates and the United Kingdom. Most of us have aspergillosis and some of us also represent organisations which provide information and support to patients.
We want to raise awareness of aspergillosis. As a rare disease, many people have never heard of it. By working together, we hope to raise the profile and encourage more healthcare professionals and researchers to take an interest in aspergillosis – with the hope of improving treatment and care in the future. We also wanted to connect with other patients across Europe to learn how they cope with the condition. Some members of the PAG have not found any other aspergillosis patients in their country, so joining a group and connecting with others means a lot.
We love that it is a patient-led group to understand our concerns and priorities for the future.
Aspergillosis is a life-changing condition. But with the right treatment and support, we can still live a good life.
Unfortunately, it can take a long time for many patients to get a correct diagnosis. This can have a huge impact on our physical and mental health. Many members of the PAG had symptoms for years before being diagnosed with aspergillosis, even when they were known to be at higher risk of developing the disease due to an underlying lung condition. One of our members even had surgery to remove sections of her lungs because doctors thought she had cancer – the surgery was probably not needed. Reducing the time it takes to get a diagnosis is a priority for patients. We believe that increased awareness and training for healthcare professionals can help them to understand what signs to look out for. Better support for patients to understand the condition and come to terms with their diagnosis is also vital.
Once a person is diagnosed, hospital appointments and long-term treatments will become part of their routine. This has its challenges and many of us have adapted our lives around our illness. Treatments for aspergillosis have many side effects, so our health must be closely monitored to make sure we don’t become ill from the medications. Anti-fungal resistance is also a concern. This is where treatments start to become less effective against the aspergillus fungus over time. We would love researchers to develop new treatments with fewer side effects and we want more patients to have access to specialists who are expert at diagnosing and treating this disease.
There is some information about aspergillosis available in English. However, the PAG has highlighted that reliable resources are desperately needed in other languages to better support patients around the world.
Friends and family play a huge role in supporting us through diagnosis and treatment, and just living with the disease day to day. Most people have not heard of aspergillosis and may have questions. It can be helpful to signpost to resources and patient stories to help them understand the impact of the condition.
Connecting with other people who are going through the same thing is also really important. Many members of the PAG first met through The Aspergillosis Trust, a patient organisation based in the UK. The group is led by patients and provides valuable information and support to anyone affected by aspergillosis. The Trust’s Facebook community has members from all over the world providing a place for connection, solidarity and humour.
In the UK, patients can also access information and support from the National Aspergillosis Centre’s CARES team. Many members of the PAG have benefitted hugely from their expertise. The group is facilitated by healthcare professionals. They run weekly support meetings for patients on Zoom and also run Facebook support groups for patients and their loved ones.
We are not aware of other patient organisations focused on aspergillosis in Europe. As a rare disease, it can be hard to find other people living with this condition. So we really welcome the ELF PAG as a way of reaching out and connecting across borders.
The ELF PAG is still very new, but just having the group is something to be proud of. We find it inspiring that people are willing to share their experiences to help change aspergillosis care for others in the future. We also learn so much from each other.
Patient advocacy is so important these days to influence health research and care. By bringing patients together to raise their voices, ELF is helping us to achieve that.
We need to continue to raise awareness, educate healthcare professionals, provide accessible information for patients and research new treatments. A key focus is to initiate change in the diagnostic journey. It would be great if aspergillosis was a condition that patients and professionals have heard of, so that individuals can get an early, correct diagnosis and start treatment.
We also want to focus on quality of life – by understanding the best ways to support each individual to live well with aspergillosis, we could set out the guidelines for good quality care for all patients.
The only way we can change things is by getting involved. Being part of a patient group like the Aspergillosis PAG provides support and information, but it is also the best way we can influence change. We are considered experts in our disease, through our lived experiences. For us, it allows us to look to the future and make something positive out of a difficult experience.
If you are interested in joining the Aspergillosis PAG, please contact Courtney Coleman from ELF: courtney.coleman@europeanlung.org
We have Patient Advisory Groups covering a range of other lung disease topics, many of which are currently welcoming new members. Find out how you could get involved in a PAG
With thanks to Jacqueline Wissing, Jill Fairweather, Lisa McNeil, Marie Unsworth, Teresa Wright and Graham Atherton for their input into this article.
