My pulmonary fibrosis journey started 9 years before my final diagnosis. In the
beginning, my radiologist suspected interstitial lung disease (ILD), of which pulmonary
fibrosis is a type of, but would be grateful to be informed of my final diagnosis. I
personally updated him 9 years later with my pulmonary fibrosis (IPF) diagnosis.
However, my IPF was not diagnosed early. Initially, two senior lung specialists told me
my cough was “normal” and my body was working “as designed.” I do not blame the
healthcare professionals’ mistakes, but I do believe that we need to work together on
complicated diagnoses like these, as patients and healthcare professionals.
I am eternally grateful to my wife who did not accept my symptoms to be “normal” and
to the lung specialists that finally put me on the right track to my IPF diagnosis, which
actually made sense.
My journey to diagnosis was a long one. Afterwards, I made the decision that if my
contribution could prevent somebody else having to go through the same diagnostic
marathon as I did, my contribution would be well worth it.
As a result, I decided to join the ELF Pulmonary Fibrosis Patient Advisory Group (PAG).
Groups like these give you the opportunity to advocate for people living with lung
conditions and share what is important to them. Here, I met other people who were
dedicated to improving the lives and raising awareness of people living with pulmonary
fibrosis.
I think attending the ERS Congress is important for 2 main reasons.
First, I find it valuable to learn from lung health specialists and scientists about the
latest developments in pulmonary fibrosis. Understanding areas such as genetics of
lung conditions and the contributions of artificial intelligence (AI) is also exciting.
Second, I value the opportunity to inform scientists, clinicians and other stakeholders
about the views of people living with lung conditions. I try to be a ‘bubble-burster.’ We
need to move away from knowledge shared within a group (in their bubble) to sharing
information between bubbles. The advantage of this is allowing healthcare
professionals and patients to gain knowledge and understand views that may not be
immediately obvious to them.
The fact that so many different stakeholders, professionals and groups can come
together in the same place is exciting. This event allows them to share their different
knowledge and experiences, creating a great environment for ‘bubble-bursting’ and
raising awareness of issues that are important to people living with lung conditions.
Do not assume that people understand things in the way that you do, you must tell them
how and why you understand it your way. Everybody is interpreting information according to their own perception and experiences which can lead to different interpretations. Opportunities like these let professionals see a part of your world which they cannot know if you don’t show them.
I truly believe that pulmonary fibrosis is an underdiagnosed disease. Before my
diagnosis, I genuinely thought my breathlessness and extreme tiredness just meant that
I needed to exercise more. I did not completely accept that exercise didn’t seem to
make it better. It was only when I acquired a persistent cough that would not go away, I
addressed the issue with my doctor.
I think that raising awareness among the public and professionals is important to help
people with pulmonary fibrosis at an earlier stage. Earlier interventions could change
the outcomes of the disease for many people.
However, I am happy that extensive research is being done on biomarkers and
electronic devices with artificial intelligence. An example is the “electronic nose”, which
could assist healthcare professionals in identifying lung conditions, such as pulmonary
fibrosis, sooner. I look forward to seeing what the future holds for IPF research.
