I suppose HN is not a good place to get answers for questions like this. There are plenty of AS support groups on Facebook, people there have more information.
Moreover, I don't really want to join a health support group on Facebook.
Fellow hackers with AS and autoimmune disorders, shoot me a PM for my nonprofit project about data & collaboration with various health actors ! (Such as biologic producers/ big pharmas)
I'm not sure how to find or create a group for really discussing pro active caretaking in the face of a serious medical condition. There seems to be no place that actually gets done. You get that kind of discussion amongst very healthy people -- weight lifters, marathon runners etc -- looking to push for extra performance. You don't get it among people who are supposed to be terribly sick and defying that expectation.