This month, ahead of our bronchiectasis patient conference, we spoke with Eliza Kompatsiari, a member of our Bronchiectasis PAG.
I am a 37-year-old criminal lawyer based in Thessaloniki, Greece. I was diagnosed with asthma 20 years ago and bronchiectasis 13 years ago. For a long time, I received no specific information or advice regarding bronchiectasis, except that it was a permanent condition that would only worsen. It was only after I had a pseudomonas infection, which made my condition much more severe, that I realised I needed to learn more about this condition. I was finally introduced to airway clearance, which was the one thing that definitely helped me. At the same time, I tried various medications, some with really unpleasant side-effects and others with no noticeable effect. Recently, however, I found medication that greatly improved my condition. I hope for advancements in bronchiectasis treatment, better diagnostic tests for its causes, and increased public awareness.
I first learned about the PAG during the first Bronchiectasis Patient Conference in 2021. At the conference, I gained a better understanding of my condition. I joined the PAG immediately after and have been an active member ever since. Through this amazing group, I have had the opportunity to learn a lot about bronchiectasis and participate in many of its activities, projects and working groups over the years. Among other things, I have helped organise two Bronchiectasis Patient Conferences and participated in the last one in 2023 with a live discussion and a video. Additionally, I helped produce the ERS Bronchiectasis Guidelines and represented the group in the meetings with the EMBARC Steering Group.
Other activities of PAG that are worth mentioning are:
All the above resources are available in multiple languages.
I encourage people with long term conditions or diseases to get involved in patient advocacy. This is particularly important for those with rare conditions. By doing so, they can gain more knowledge about their condition, help other patients and specialists in learning more about it and work together to advocate for new research and solutions to everyday problems they face when interacting with professionals or the community. In bronchiectasis this is even more relevant, as it is a condition that most often affects older people. As we get older, however, it tends to be more difficult for us to talk openly about problems that may have plagued us all our lives. It is important though, that instead of hiding from those around us or having to constantly explain that what we have is not contagious, we find the courage to speak up and advocate for ourselves and others with the same condition. It’s a collective struggle that needs everyone’s voice.
The conference is designed for individuals with bronchiectasis, their caregivers, and specialists. Attending the conference will be highly beneficial for each of these groups. There will be live talks and videos by both patients and professionals. During the conference, attendees will have the opportunity to ask questions, which is an important feature of the event. Over the course of the conference, experts in the field will be answering these questions in writing, and in addition, speakers on each panel will provide oral answers to some of the questions.
Regarding the conference themes, the presentation of the latest bronchiectasis research always raises special expectations. This year’s conference will also focus on the personalised approach and shared decision making in the treatment of bronchiectasis. I am particularly interested in the topic of living with bronchiectasis alongside other diseases, especially regarding complications. I am also looking forward to the session on “What works in bronchiectasis”, where patients with bronchiectasis will talk about things that have helped them with problems that we all face.
