• Good site for information on all things to do with PF

    Posted by scott-robertson on May 13, 2023 at 12:49 pm

    Hi,

    Have posted here a few times and have replied to several other posts.

    Not an expert in PF at all and as a newbie have gained most of my understanding, or lack of from my own Googling!!

    One of the best sites I have found for a good deal of info on the disease is the pulmonary fibrosis foundation.It has lots of information and best of all this is well written in a manner that is clear and too the point.At the bottom of their site they have a pulmonary fibrosis information guide which I thought was excellent in relaying information that others might find useful.

    Hope others may find this useful and likewise please share links or suggestions also. Knowledge is a powerful thing.

    Scott

    Larry70 replied 4 months ago 5 Members · 8 Replies
  • 8 Replies
  • Charlene Marshall

    Member
    May 14, 2023 at 8:43 am

    Agreed Scott, the Pulmonary Fibrosis Foundation’s website is a wealth of knowledge about this disease. I encourage folks to use it as one of their primary (if not their primary) source of information about IPF. Take care!

    • scott-robertson

      Member
      May 14, 2023 at 8:56 am

      Thanks Charlene,

      As a newbie it is clear from this forum alone that getting one’s head around all the info and terminology can be confusing and frustrating in equal measure so it is good to have such well thought out contents in one place.

      I also want to thank you for the steady steering of this particular forum ship. Your journey is well documented here and resonates with so many others. It is too your credit that you give so much of yourself too helping others whilst going through your own journey, both highlighting the positives and negatives which is important.

      My thanks from Sunny Scotland!!!
      Scott

  • scott-robertson

    Member
    May 14, 2023 at 9:01 am

    Charlene,

    Forgot to say but purchased the guide to pulmonary fibrosis and interstitial lung disease book

    A fantastic resource for anyone

    well done for your contribution and time to this project.

    Scott

  • Charlene Marshall

    Member
    May 14, 2023 at 9:21 am

    Hi Scott,

    Thank you for your kind words, and I’m thrilled this forum has been helpful to you… it sure has been a labour of love and wouldn’t be possible without the vulnerability and contributions of everyone here. I think the patient-to-patient sharing is what makes this site so special, of course I am bias though ;). I’m also thrilled to hear the book has been helpful to you, also another labour of love throughout the past couple of years!

    Take care and thanks again for your kind words.
    Char.

  • grahamg

    Member
    May 18, 2023 at 9:01 am

    Hi. Still trying to contact anyone who has  experienced stomach bloating side effect of Esbriet / Pirfenidone which according to the maker can effect up to  1 in 10……thanks Graham

     

    • scott-robertson

      Member
      May 19, 2023 at 5:30 am

      Hi Graham,

      There is a specific subheading for for all things to do with Esbriet (pirfenidone) under the forum tab, scroll down.

      You would likely get people answering if you post you’re question there or may even find the information you are looking for already discussed.

      you can also try doing a search and see what comes up, the search facility seems very good on this forum.

      kindest regards and hope you get the answer to your question.

      Scott

  • Donald Burgner

    Member
    September 2, 2023 at 8:46 pm

    Thank you.

  • Larry70

    Member
    December 14, 2023 at 7:33 pm

    People may already know this (I just found out) that this Pulmonary Fibrosis Foundation also puts out many comprehensive video webinars with experts who talk about many issues related to IPF/PF. I’ve learned a huge amount from these videos here’s a link to their playlists on YouTube, – https://www.youtube.com/@pfforg/playlists

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