In a new article published in Breathe, an ERS publication, Natalia Maeva shares her personal journey living with pulmonary arterial hypertension (PAH) and the impact of breathlessness on daily life. ELF speaks with Natalia on her experiences sharing her story and the importance of patient voices in professional journals.
Natalia Maeva’s story: Living with Pulmonary Arterial Hypertension: A Patient’s Perspective on Dyspnoea Crises was published in the journal, Breathe. Breathe is a free-to-access clinical educational publication from the European Respiratory Society.
Writing this article was both challenging and an honour for me, especially as I work professionally as a radio journalist in Bulgarian National Radio, Hristo Botev Chanel. I consider it a great privilege that my story found its place in the pages of the journal Breathe. Sharing personal patient experiences is incredibly important, particularly when it comes to those living with pulmonary arterial hypertension (PAH).
I hope healthcare professionals will gain a clearer understanding of the daily realities faced by patients like me—beyond clinical data—so they can approach care with greater empathy and awareness.
Additionally, I want to encourage patients to feel confident in sharing their experiences and needs, as their voices are invaluable in shaping better care strategies.
As a new member of the ELF Council, my aim is to amplify the voices of patients and highlight the unique challenges faced by those affected by rare diseases.
In many parts of Eastern Europe, there is still hesitation about the benefits of European Reference Networks for rare diseases. By working with healthcare professionals and policymakers, I hope to bridge the gap between patients’ needs and systemic solutions. My goal is to ensure that patients are not seen as just recipients of care but as active participants in shaping how it is delivered.
Professional journals are essential for bringing patient experiences to the forefront of medical discussions. They provide a credible and respected platform that reaches both clinicians and researchers, helping them understand the human side of disease.
Journals like Breathe can foster collaboration by publishing patient-authored pieces, featuring patient stories into clinical studies and emphasising the importance of patient-centred care in their editorials and guidelines.
The country I live in continues to lag in terms of access to new therapies for PAH. Bulgaria does not have its own programme for lung transplants and, since 2019, Bulgarian health authorities have struggled to establish effective collaboration with their European counterparts. As a result, the six patients currently on Bulgaria’s transplant waiting list are left without a clear path to receiving life-saving lung transplants. For patients in Eastern Europe, PAH remains like an iceberg, with many struggling due to delays in diagnosis and slow access to life-saving treatments.
Patients in Bulgaria and other parts of Eastern Europe often face significant barriers, such as limited access to modern treatments, not enough funding for healthcare and other administrative obstacles. These problems are worsened by differences in healthcare quality between countries in the EU.
Achieving greater equity requires harmonisation of policies across member states, increased funding for underfunded healthcare systems and stronger advocacy efforts at the EU level. Patients can play a vital role in driving change by forming networks, sharing their stories and advocating for reform through collective action and active engagement with decision-makers.
Start by connecting with patient organisations and advocacy groups. These networks provide valuable resources, training and opportunities to make an impact. Share your story—it’s one of the most powerful tools for creating change. And remember, advocacy takes persistence. Whether it’s participating in campaigns, attending conferences or engaging with policymakers, every step makes a difference.
I would like to emphasise the importance of collaboration between patients, healthcare professionals, researchers and policymakers. True progress happens when we work together, valuing each perspective equally. I also want to encourage more investment in patient education and community-building initiatives, as these empower individuals to take control of their health and advocate for their needs.
