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Good site for information on all things to do with PF
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
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8 Replies
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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!
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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
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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
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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. -
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
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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
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Thank you.
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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
youtube.com
The Pulmonary Fibrosis Foundation (PFF) mobilizes people and resources to provide access to high quality care and leads research for a cure so people with pulmonary fibrosis will live longer, healthier lives. We are proud to serve as the leading … Continue reading
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