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

by Stephen Cobb on July 13, 2011

Post image for 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 people per 1000, and is described as “the potential for homozygous or compound heterozygous variations of the HFE gene according to this reference: *Steinberg KK, Cogswell ME, Chang JC, Caudill SP, McQuillan GM, Bowman BA, Grummer-Strawn LM, Sampson EJ, Khoury MJ, Gallagher ML. JAMA. 2001 May 2;285(17):2216-22. Prevalence of C282Y and H63D mutations in the hemochromatosis (HFE) gene in the United States.”

So why is this ignorance deadly? If you do not treat hemochromatosis it can cause toxic levels of iron to build up in your body and lead to liver cancer, cardiomyopathy, and diabetes, to name but a few of the potentially life-ending complications of this easily treatable condition.

Wait? Did I just say “easily treatable”? Yes, the bitter “irony” of our society’s massive ignorance of this condition is that its ill effects can be staved off through the simple act of–wait for it–giving blood. That’s right, the treatment for hemochromatosis is giving blood and, according to the FDA, that blood is perfectly safe and can be used to increase our nation’s blood supply.

Ain’t knowledge grand!

Note:  Due to ignorance, many blood banks throw away blood from hemochromatosis patients or even charge them for “filtering.” This is infuriating, immoral, and should be illegal. The FDA is quite clear that the blood is good, and so is the NIH.

{ 2 comments… read them below or add one }

JANA SKINNER February 16, 2013 at 9:46 am

HERE IN CA IT COST $160. FOR A PLYEBOTOMY, TEICE A MONTH..CANT AFFORD IT…..FOUND ONE PLACE 20 MILES AWAY CALLED LIFESREAM, HOPE IM NOT TO TIRED TO DR BACK…CA TRAFFIC AND BE HORRIBLE, IS THIER ANYTHING I CAN DO SO CA WILL TAKE HH BLOOD FREE FOR DONATION, I UNDERSTAND IT HELPS OTHER SICKNESES

Reply

MarchBorn October 3, 2013 at 11:22 am

I have read on a few HH sites that therapeutic phlebotomy (TP) treatment is free and the blood that is collected can be used. I am receiving treatment in California and 1) I pay for my weekly TP treatments and 2) the blood taken is not used but is disposed. I was told that there is a lot of “red tape” and paperwork needed to use HH blood. My phlebotomy treatment is done at a hospital donor center.

Reply

Leave a Comment

Previous post:

Next post: