A Call to Share Your EGCG Experiences With BioNews Insights

A Call to Share Your EGCG Experiences With BioNews Insights
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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.

Thanks for stopping by my column! My name is Charlene Marshall and I was diagnosed officially with Idiopathic Pulmonary Fibrosis (IPF) on April 7 2016 after 13 months of various tests, hospitalizations and misdiagnoses, such as bronchitis and asthma. Due to my age, the specialist disclosed that he was unsure how the IPF would manifest itself in terms of progression, and whether it would be fast or slow and what the course of my illness might look like. Not much has changed since then, meaning there is still a lot that remains unknown, which is largely due to my age and how “rare” it is for someone under 30 to receive a diagnosis of IPF. That being said, a lot has changed for me in the time since diagnosis and I am looking forward to sharing some of those changes with you through this online platform, and I invite you along for the ride! Throughout this column I intend to chronicle the experience of living with an invisible, yet fatal disease as a young adult and share some stories about how IPF has impacted every aspect of my life, both good and bad, thus far. I plan on highlighting the challenges (and where I can, the positives…) that come with living with IPF and the impact on social and intimate relationships, finances, family dynamics, facing mortality, infertility, travelling, medication side effects, career goals and so much more as it arises for me as a “new” patient. I hope others’ with similar experiences will reach out as no story trumps any other, nor should any go unheard. For now, let me leave you with some personal details about who I am, outside of my IPF diagnosis. I grew up in a small town in south-western Ontario and still live within Ontario, although in a much bigger city. My favorite sport is/was underwater hockey (yes, it is a thing: look it up on YouTube), I love working with people, I work full-time in the Social Work/Social Services field, I am an avid learner filled with heaps of curiosity for the world, which lead me to start my Masters Degree in 2014. I am in the last few months of my Masters Degree and am looking forward to an upcoming trip to Australia more than I’ve looked forward to anything before. Welcome to the shambles and chaos that is my life!
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Thanks for stopping by my column! My name is Charlene Marshall and I was diagnosed officially with Idiopathic Pulmonary Fibrosis (IPF) on April 7 2016 after 13 months of various tests, hospitalizations and misdiagnoses, such as bronchitis and asthma. Due to my age, the specialist disclosed that he was unsure how the IPF would manifest itself in terms of progression, and whether it would be fast or slow and what the course of my illness might look like. Not much has changed since then, meaning there is still a lot that remains unknown, which is largely due to my age and how “rare” it is for someone under 30 to receive a diagnosis of IPF. That being said, a lot has changed for me in the time since diagnosis and I am looking forward to sharing some of those changes with you through this online platform, and I invite you along for the ride! Throughout this column I intend to chronicle the experience of living with an invisible, yet fatal disease as a young adult and share some stories about how IPF has impacted every aspect of my life, both good and bad, thus far. I plan on highlighting the challenges (and where I can, the positives…) that come with living with IPF and the impact on social and intimate relationships, finances, family dynamics, facing mortality, infertility, travelling, medication side effects, career goals and so much more as it arises for me as a “new” patient. I hope others’ with similar experiences will reach out as no story trumps any other, nor should any go unheard. For now, let me leave you with some personal details about who I am, outside of my IPF diagnosis. I grew up in a small town in south-western Ontario and still live within Ontario, although in a much bigger city. My favorite sport is/was underwater hockey (yes, it is a thing: look it up on YouTube), I love working with people, I work full-time in the Social Work/Social Services field, I am an avid learner filled with heaps of curiosity for the world, which lead me to start my Masters Degree in 2014. I am in the last few months of my Masters Degree and am looking forward to an upcoming trip to Australia more than I’ve looked forward to anything before. Welcome to the shambles and chaos that is my life!
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2 comments

  1. I’m not sure what the longitudinal survey would include,
    but I am not on OFV nor Esbriet and have been taking Teavigo Green Tea Extract, 600mg of EGCG (Swansons decaf) for two weeks.

    • Charlene Marshall says:

      Hi Janice,

      Thank you so much for getting in touch regarding our EGCG project. I really appreciate it, and based on your experience, you’d be a great fit for our experimental group. I’d love to provide you with more information on the project, and our BioNews Research Team can do that. May I have your permission to share your email with them? From there, Jenn P or Jen C will be in touch with you regarding next steps, or to answer any questions you may have. It is always important for me to first obtain permission before ever sharing personal information, such as an email. 🙂

      Feel free to connect with me directly if that is easier: [email protected].

      Sincerely,
      Char.

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