I'm actually an OB nurse but I'm coming to you all with a topic/question that is very close to my heart. I am wanting any personal experiences, knowledge, etc about patients with pulmonary fibrosis. Two years ago my grandfather was diagnosed with pulmonary fibrosis and given 6 months to live, which turned out to be accurate. Two years before that his brother died of PF. Today, one of his sisters, my great aunt, was diagnosed with PF. Keep in mind, I am young, all of these people have been diagnosed in their early 60's. I am feeling a little doomed here. From the research I have done, 3-6 out of 100,000 people are diagnosed with PF. Now 3 of those 100,000 are in my family. Does anyone know anything about familial PF or where I can get more info? Any universities/hospitals currently doing research? Any current studies my family could participate in?
Any help would be very much appreciated. This seems to be a diagnosis that is somewhat rare.
