So I thought I'd take this opportunity to bring people's attention to the documentary RARE that follows two people with the rare disease Hermansky-Pudlak syndrome (HPS) as they enter a phase III drug trial for a medicine that is thought to help slow the progress of pulmonary fibrosis. HPS is thought to be as rare as one in a million, but it could be slightly more common, say one in three-to-four-hundred-thousand. But the pulmonary fibrosis associated with HPS shares most characteristics with a much more common condition idiopathic pulmonary fibrosis, so the drug being tested in the documentary is one that had been found to help with IPF. Unfortunately, even though the drug is generally considered about as safe as any other drug, the FDA still hasn't approved it, despite the fact that it has been approved in Europe.
The reason all this is important to me is that I have this condition myself and so does my sister, and we happen to have a form (HPS-1) that involves pulmonary fibrosis. So it's pretty important to me that they find a cure as soon as possible since death by pf is one of the least pleasant ways to go. D: