Have you ever suddenly realized you are part of something special?
This happened to me today during a video call with other members of the BioNews Insights (BNI) team. BNI is a relatively new division of our company, BioNews, focused on market research. The team is small, but this morning, we had six people on our call, four of them representing different rare diseases, which felt really special.
I’d like to echo some of the sentiments from a previous column from a woman with SMA, titled “What Working at BioNews Has Taught Me.” Becoming a columnist and writing about my experience as a young adult with IPF has been incredibly rewarding in more ways than I can count. Everyone at BioNews is invested in rare disease patients, but what makes this company so special is how our voices are truly valued.
I’ve spoken to many in the PF community who feel their voice is rarely heard when it comes to their medical care, advocacy efforts, or opinions about things that could make living with this life-threatening lung disease easier. This is not the case at BioNews, and I am grateful that our collective voice as rare disease patients is honored here.
Last January, I wrote a column about how being vulnerable as a chronically ill patient can be beneficial. I detailed many opportunities I’ve had as a result of sharing my story and becoming a patient advocate for others with PF. I’m grateful to have affected others, but I also can’t neglect how becoming part of the BioNews team has helped me. My role as a columnist and moderator of the Pulmonary Fibrosis News Forums has been therapeutic, as being able to help others motivates and inspires me. It’s helped me cope with the grim prognosis of this disease and given me something to do about my diagnosis.
Now, as part of the BNI research team, I have the opportunity to do even more work for the PF community, alongside a team of other patients, researchers, and BioNews staff. We’re almost ready to launch a longitudinal survey about PF patients’ experiences with epigallocatechin gallate, or EGCG, an organic compound in green tea that is believed to have several health benefits. EGCG has been a popular topic at our forums, particularly since The New England Journal of Medicine published an interesting study about it earlier this year. In that study, EGCG appeared to be associated with lower levels of fibrotic markers in patients who were given it.
While BNI does not have the ability to conduct a clinical trial of EGCG, we are excited to learn about the experiences of patients who use it via a survey. More information about how we plan to do this can be found at the forums, and we’re grateful to everyone who has expressed interest in our experimental group thus far.
Our call to action is unique, and before we get started, we need additional control participants for the project, specifically patients who are not taking EGCG, Ofev (nintedanib), or Esbriet (pirfenidone). If you might be able to help us, please read this forum post about how to connect.
Members of the BNI team hope that documenting the experiences of PF patients taking EGCG will prompt further conversation about it.
We are excited to see what kind of information this project will generate. However, we want to make it clear that we are not recommending patients start or stop taking EGCG, nor will we provide guidance about dosage. Those types of decisions are up to you and your healthcare team. This project is observational, and we hope it will generate discussion between members of the PF community, physicians, and researchers.
Thank you in advance for helping us with this project!
Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.
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