Why doesn't anyone know anything about hereditary hemochromatosis (hh) if it is so common? i feel all alone.

Hemachromatosis: Quite a bit is known about the disease, but those who have it often do not find out about the disease or that they have the disease until they have some damage. It is also a disease that cannot be cured, but can be controlled for most people though monitoring with tests, and blood (iron) removal.

See a Geneticist: You are not all alone. As a geneticist, I have many patients with hh. The prevalence of hh is between 3-5 / 1000 persons. That's not high but that means that there are quite a number of individuals with hh in the us. May i suggest you contact one of the support groups. Here is a good place to start. www.cdc.gov/hemochromatosis/faq.

Under-recognized: Actually around 1 person in 200 has it, but it often gets missed -- I've seen it enough at autopsy as a "surprise". If you're diagnosed, be thankful that of all the common, lethal disease it is by far the easiest to manage. There's no glamor, ribbon parades, or sad advertisements simply becuase it's so readily manageable with phlebotomy.