When it comes to rare diseases, I don't think we can blame our providers, " far too few doctors or physicians recognize the symptoms and don’t order CT scans and other tests early on..."

Only 1-2 people out of every thousand in this country has bronchiectasis, and many of those are silent or undiagnosed, so the typical provider seldom sees a case. Even my first pulmonologist, in practice for over 25 years, said he only sees a handful of cases a year, and even fewer cases of MAC. My current pulmonologist oversees a large practice in a metro area and with my ID doc, sees roughly 25 cases a year.

Also, since neither MAC nor Bronchiectasis is contagious, is typically not fatal, and mainly affects older women, it is never going to be a draw for research dollars - we just need to keep prodding, and doing our own bit to donate to the organizations where research is ongoing.

And here on Mayo Connect, this support group will keep supporting one another, answering questions and providing links to emerging research and treatments. We are already light years ahead of where we were even 5 years ago in knowledge, emerging medications, and strategies (like 7% saline nebs) for managing our health.

Sue