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. 2025 May 8;25:221. doi: 10.1186/s12890-025-03689-8
“I Googled everything I could find and read everything I could find. Through the support group on Facebook, I ask questions of people. I was like a sponge just taking in everything that I could read about it.” (65, F)
“I was told, in fact, to stay away from the websites, and I can't remember if it's the first one or just the second. He said the information out there on websites is not really that accurate. I never looked it up on the Internet.” (64, M)
“I'd read. Yes, I was absolutely prepared and that's what she said. She goes, ‘You know so much.’ I said, ‘I've been a captive audience for a year reading and reading.’ I belong to several groups online. Of course, I'm gleaning a lot of information from that, Pulmonary Fibrosis Foundation.” (74, F)
“There're several Facebook support groups. I joined those and they do monthly or whatever, but one of them even weekly online phone calls. Just support and let people ask questions like stuff either they hear about it or learn from their doctors. It's good to have some of that other information too.” (69, M)
“Yes, I joined a support group. It's amazing how much I had to learn through that. People from all over the world are in it. They all tell their stories. They tell what they're taking, and they discuss what can be done and what is being done.” (63, F)