Showing posts from July, 2011

Hemochromatosis Blood: An untapped national resource?

The use of blood taken from hemochromatosis patients is a hot topic right now over on the Hemochromatosis Facebook page. The are wide discrepancies in how medical facilities handle hemochromatosis blood.

So we want to highlight some useful resources that can help spread awareness of the fact that hemochromatosis blood is fine to donate and bank, just like "normal" blood:

Iron Disorders Institute info sheet on use of HHC blood (printable PDF)
Centers in your state that use hemochromatosis blood

The first item is a great way to educate people on this topic and it is easy to print out. So why not download it, print it up, and drop off a few copies at your doctor's office, health clinic, or blood donation center? The more people who know hemochromatosis blood can be used, the stronger our country's blood supply will become. Consider this:

Hemochromatosis patients give a lot more blood than the average citizen, particularly in the early stages of treatment.
You can't "…

Deadly Ignorance: 13 million Americans have hemochromatosis, but most have never heard of it

Can you die of ignorance? You surely can. Ignorance of hemochromatosis kills countless thousands of Americans every year. Just how ignorant are we of this deadly genetic disorder? Here's a quick test: Have you ever heard of one or more of the following genetic conditions:

Cystic fibrosis • Down syndrome
Sickle cell disease • Haemophilia

Guess what? They are all rarer than hereditary hemochromatosis! Maybe you don't believe me, so you Google "most common genetic disorders" and you find some lists and hemochromatosis is not on them. Why is that? The lists are wrong! That's how widespread the ignorance is.

The fact remains, well documented, that hereditary hemochromatosis or genetic haemochromatosis for our British readers, is carried by at least 1 in 10 people in America and probably at least as common in Britain.

Want to get academic about it? The number cited by the Iron Disorders Institute, a non-profit with many respected physicians on its board, is 0.043 or 43 peop…