This month, we spoke with Eleni, a member of the ELF Pulmonary Fibrosis Patient Advisory Group. As September is PF Awareness month, we discussed the importance and significance of PF awareness, her journey from diagnosis to patient representative, and her hopes for the 2025 ERS Congress in Amsterdam.
My name is Eleni Stamouli and I am 62 years old. I was born in Thessaloniki, Greece, and I have lived here all of my life. I am happily married and I have a son who lives and works in Athens.
I studied at Aristotle’s University of Thessaloniki in the Faculty of Philosophical and continued my studies in other areas, such as business computing and project management.
I established my own business in my 20s and I was successfully running my company for 37 years until I was diagnosed with pulmonary fibrosis (PF).
I was diagnosed with PF in 2019 when I was 56 years old. My symptoms were not very bad to start with. I had a persistent cough for about 3 months and breathlessness when climbing stairs.
I went to a family doctor, and he asked me to have a lung X-ray, which showed clear signs of PF. A CT scan confirmed that my lungs were scarred and damaged by fibrosis. I was then referred to a clinic that specialises in PF and, after a spirometry test, the clinicians made the final diagnosis for my lung condition.
This process was very traumatic for me. I knew very well what a PF diagnosis meant. I lost my mother from the same disease 10 years ago. I could not believe that this was happening to me. I was already deeply wounded from my mother’s experience with the disease and her death. Now, the same doctor who had diagnosed her 5 months before her death was diagnosing me with PF.
The situation was overwhelming. After 10 years, I had to change my role from caregiver to PF patient. The shock for me and my family was indescribable.
It felt like I had two cases of fibrosis: my mother’s, which was in the last stage and something I could never take out of my mind, and my own, which was in a severe and advanced condition.
The period in which I had to go to medical appointments, have lung examinations, lung function tests and a never-ending number of other medical tests was very traumatic and full of uncertainty. I worried a lot about my health and felt a lot of overwhelming sadness. I remember that I was going from one medical center to another and I didn’t really understand what was going on.
I thought that all of this concerned someone else and not me. I cried a lot, tears flowed silently from my eyes and I was unable to stop them, grieving for the big loss of my health.
After the shock of my diagnosis, I had to face my new reality and cope with many changes. Pulmonary fibrosis has affected almost every part of my life.
I had to retire early, downsize my home and adjust my daily routine. Physical activity became harder and simple tasks like walking or climbing stairs can be exhausting. The symptoms of the disease, side effects of medication and constant tests take a toll on both body and mind.
Emotionally, it has been very challenging. I have experienced fear, anxiety, sadness and uncertainty. My sense of control and self-esteem were affected.
To manage, I had to establish a new routine and take care of my mental health. I learned to be compassionate with myself, stay physically active, practice mindfulness and connect with support groups. Volunteering and helping others also improved my mood.
Living with PF means adapting to a new normal, taking one day at a time and finding ways to keep living a meaningful life.
From the time of my diagnosis, my husband has been my main companion and my greatest support. My husband, my family and my friends gave me strength to begin my journey and find out a way to face this incurable disease.
The most important step I took was realising early on that I was not suffering only from my lung disease, but that it was also affecting my mental health and causing depression, which had taken over my sense of self.
I fully understood that I could not treat my lungs without treating my mind.
I began mental health treatment with an exceptional psychiatrist, who volunteered after his work hours and had weekly sessions with me for 5 years.
I owe a lot to my psychiatrist and I will always be grateful to him because he guided me to find my mental balance and the strength to cope with PF. I have learned how to be compassionate with myself, to allow myself to not always be strong and to understand the value and significance of living in the moment.
All of this has helped me let go of my fears and the difficult memories of my mother and it pushes me to be active, involved and full of energy to fight and to live.
Pulmonary Fibrosis Awareness Month is important because it brings much-needed attention to a serious, often misunderstood lung disease that affects hundreds of thousands of people worldwide. Despite this, PF remains underdiagnosed, underfunded and frequently misidentified.
Better knowledge of PF could save lives through earlier detection and improve access to care and support. Although PF is incurable, treatments and oxygen therapy can improve quality of life. Raising awareness also helps patients get the right referrals, access clinical trials and receive vital emotional support. Misdiagnosis is common, so understanding the condition better can help avoid this.
As someone living with pulmonary fibrosis, I want people to understand that this is a progressive, serious lung disease. It is not just ‘getting out of breath easily.’ It affects every part of daily life: walking, talking, even sleeping.
PF can also be invisible. You might not look sick on the outside, but inside, your lungs are stiff and scarred, and you are constantly working harder just to breathe.
Awareness is crucial not only for the public, but also for healthcare providers. Early diagnosis can make a real difference. Better understanding can lead to more compassion, better support, and, hopefully, more research into treatment and a cure.
I want people to know that while PF is tough, patients like me are not giving up. We still have goals, humour, relationships and a life worth living. Pulmonary fibrosis does not define who we are.
I know firsthand the challenges of navigating a complex disease, from diagnosis and treatment to the emotional impact it has on everyday life. I wanted to use my voice to help others going through similar journeys, and to make sure that patients are heard and involved in shaping the future of respiratory care.
Being part of ELF gives me the opportunity to share my perspective, raise awareness and work alongside others who are committed to improving the lives of people with lung conditions.
The strongest inspiration to stay involved and increase my participation in ELF’s actions came from the extraordinary people I met there. I worked alongside patients and ELF’s staff whom I greatly admire for their ideas, persistence, courage, strength, and compassion. All these people made me a better person and empowered me to continue being involved.
For me, being involved in ELF’s activities gives my life social meaning, makes me feel a sense of self-worth and boosts my self-esteem.
I look forward for this year’s upcoming ERS CONGRESS.
At events like the European Respiratory Society (ERS) Congress, patient representatives can play a crucial role – not just as participants, but as partners in shaping better respiratory healthcare. Our lived experience offers unique and powerful insights that healthcare professionals and researchers cannot gain from data alone.
That is a great question. I would break this down into practical, emotional and lifestyle advice.
Some practical advice:
Some emotional advice:
Some lifestyle advice:
