Hi Gavin,

I am sorry to hear the anxiety in your post. I feel for you and understand. I am 79 and was diagnosed with NSIP back in 2017. I was frightened and anxious as well. I got no satisfaction from doctors or nurses and searched and read all I could find on the internet and in books. Nothing that fully explained me and my condition.

What… Read more

No, but there is a reasonable review of the film by The Guardian news when you Google the film name. And a film clip. Seems to be not so much about IPF bu about struggles with one’s own death.

James, in addition to this support group, another very good online group fo information is inspire.com. Use google search online to search for of support groups in Los Angeles and you will find a number there. You can also probably find others who have experience with second opinions at the other Center’s you mentioned. Read, read, read to learn… Read more

Mark, sorry to hear about your brother. He was clearly a loved one. While we all will pass away eventually as a natural part of life, the loss of a loved one is a difficulty for those left behind. Thankfully the loved one will always be with us in our heart and mind and in our total makeup. They will have passed on much of themselves into… Read more

Hello, I was diagnosed with NSIP, a form of PF and IPF (I think), and used to have phlegm that I could not cough up. But I, over the last year or more, have been able to cough up enough during the first hour or so after awakening, so the phlegm now only occasionally sticks in my chest or throat. But during the earlier difficulties, my NZ… Read more

I echo all the feelings expressed so far for our beloved Kim. I echo the sympathy to her family and close friends like you Charlene. I also echo the sympathy to her extended flock of PF compatriots who have come to feel her compassion. I mourn her loss too. I thankfully celebrate her selfless giving to us all and will remember her and… Read more

I do belong to two local support groups here in NZ but am the only one in both that has something other than asthma and/or COPD.

I live in New Zealand and am treated by the government health services but … have yet to find nurses or doctors that know enough to be able to talk to about anything related to pulmonary fibrosis much less the fibrotic NSIP they have confidently diagnosed. I know what little I know about it from researching the internet and from inspire.com… Read more