What made you get involved in research?
I think the key moment was when I found out there’s no cure for my diagnosis. When I was diagnosed with idiopathic pulmonary fibrosis (IPF) it was a huge shock for me and my family. I felt compelled to do something to make the situation better, not just for me, but for other patients so nobody has to go through this situation in the future.
What motivates you to get involved in research?
I am a strong believer that research is key to finding a cure and better medications to improve the quality of life and care of patients. Being involved in research has also helped me to improve my understanding of my condition and how to live my life in a way that helps me to deal with better with the symptoms of IPF.
What have you done to get involved in research?
I have volunteered to take part in various study projects and new drug trials to help research into IPF. Some of these are simple procedures involving completing research questionnaires while others required physical exercises and/or taking medication, always under the guidance of medical staff. I feel that most patients could and should take part and support research.
How does it make you feel being involved?
It makes me feel that, although no cure has been found so far, through research there has been progress and doctors have gained a huge amount of knowledge. Being involved in research makes me feel that I am helping, not just myself, but also others in the fight against this awful disease. I am full of admiration for patients taking part and medical staff working in research and I am looking forward to the day when IPF is no longer a terminal disease.
Would you like to get involved with pulmonary fibrosis research?
There are lots of different ways that you can get involved in research and these vary in the time that it takes and what you will be doing. It could be as simple as spending a few minutes reading about research or listening to a webinar.
You can share your views and lived experience of pulmonary fibrosis with researchers to help them to develop better quality research that is important and relevant the pulmonary fibrosis community. This is called patient and public involvement and is a valuable part of the research process.
Taking part in research doesn't just mean testing a new drug. For example, being a participant in a study may involve filling out a survey, taking part in an exercise program, or testing a new technology.
There are lots of different ways you can get involved if you would like to. You can speak to your clinical team about opportunities to take part in research or contact us for more information.
Read about Pepe's experience of living with the IPF cough
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