Hemingway's Death and Hemochromatosis Awareness

Ernest Hemingway, one of America's greatest writers, died from hereditary hemochromatosis on July 2, 1961. He was one of a number of Hemingways who succumbed to America's most prevalent genetic killer, a condition that is remarkably cheap and easy to treat, and may do very little damage if detected early enough.

If you're like me, you were taught in school that Hemingway died of a self-inflicted gunshot wound. However, it is clear to many that the underlying cause of his death was iron overload due to hereditary hemochromatosis or HHC, also known as bronze diabetes and Celtic Curse. Why? Hemingway suffered from classic iron overload issues, like liver problems, heart disease, diabetes. Depression and suicide are both associated with hemochromatosis (numerous people on his family tree committed suicide).

[The first version of this article was written by Stephen Cobb in 2011. It was revised in 2016 and refreshed more recently to mark World Haemochromatosis Week 2020, June 1…

Blood Variance and Hemochromatosis: Iron News from the Iron Disorders Institute

This is just a quick post to remind folks that the Iron Disorders Institute (IDI) has a ton of information about hereditary hemochromatosis. You will find a lot of useful documents in the library on the IDI website.

You can also get their monthly newsletter via email. Here's a link to the latest issue in which Executive Director, Cheryl Garrison, provides a very helpful update on what happens to "hemochromatosis blood"... that's the blood drawn from people with hemochromatosis to reduce excessive iron levels.

As the IDI notes, the FDA has published a Final Rule called “Requirements for Blood and Blood Components Intended for Transfusion for Further Manufacturing Use.” Among the many changes included in this Final Rule is "the elimination of the need for a variance if a blood bank will be using blood for a hemochromatosis (HH) patient." For what all that means for folks who are getting phlebotomies to regulate their iron, check out the Iron News.

Remember to us…

HFE testing: an open letter to the American College of Medical Genetics and Genomics

Dear American College of Medical Genetics and Genomics:

According to a recent article on GenomeWeb your organization, the ACMG has declared that: "HFE testing shouldn't be ordered for patients who don't have iron overload or a family history of HFE-related hereditary hemochromatosis." Frankly, this is some of the worst medical advice I've ever seen published, it defies the logic of real life, and does so in a way that reinforces a number of medical stereotypes.

I invite the ACMG to address the following five realities as they relate to the two limited conditions under which your organization would permit people to find out whether or not they are carriers of a potentially crippling and deadly genetic condition, otherwise know as HFE testing.
A. Re: "a family history of HFE-related hereditary hemochromatosis"
In your version of reality, how do people know if they have a family history of HFE-related hereditary hemochromatosis (HHC)? In the real world, many p…

Menopause + Hemochromatosis = Hemopause (and women of a certain age are at risk)

Are you dealing with menopause, or the approach of menopause? Then this blog post is for you. Some women approaching menopause are at risk of absorbing too much iron, resulting in serious joint pain and damage to the liver, pancreas, heart, brain, and other soft tissue.

Why? Before menopause, the menstrual cycle gives women a natural defense against excess iron buildup; that monthly loss of blood removes iron from the body. However, this can mask a surprisingly common genetic disease called hemochromatosis in which the body's normal handling of iron is disrupted, leading to a potentially fatal condition called iron overload (it's what killed Hemingway and it's what Tamra Barney's son Ryan has on Real Housewives of Orange County).

This blog post explains the problem and how to defend yourself and the women you love.
What is Hemopause?
Without that natural monthly loss of blood, undiagnosed hemochromatosis can start causing damage that is hard to detect before it becomes irr…

Hacking hemochromatosis: how to get your HFE gene status via 23andMe (C282Y, H63D, and S65C)

If you already know about hereditary hemochromatosis and you want to find your genetic HFE status, you can skip to section 2 for the link to download our document that shows how to use raw 23andMe DNA data to check your HFE for C282Y, H36D, and S65C. If you are new to hemochromatosis, start with section 1.
1. About hereditary hemochromatosis
Sometimes referred to as HHC or simply HH, hereditary hemochromatosis is a genetic condition in which your body accumulates iron in joints and organs (also called genetic haemochromatosis in some countries and nicknamed bronze diabetes and Celtic Curse).

If untreated, HH can lead to iron overload which causes cirrhosis of the liver, diabetes, heart disease, endocrine problems, depression, impotence, and joint pain and eventual replacement. However, if detected early enough, which sometimes happens due to above normal readings on a set of tests called an iron panel, the effects of hemochromatosis can be kept at bay through supervised blood donation re…

Introducing Hemo-Doc-Stars: doctors who 'get' hemochromatosis

To mark Hemochromatosis Awareness Month this July, 2014, we asked visitors to the Fighting Hemochromatosis page on Facebook to let us know if they had encountered a GOOD hemochromatosis doctor. Why? Doctors who 'get' hemochromatosis are hard to find, even though hereditary hemochromatosis is the most common genetic killer in America today. We were pleasantly surprised to get scores of responses, some with rave reviews from patients. So, thanks to those patients who took the time to share their experience, we can now present the first edition of the “good hemochromatosis doctor” list, dubbed Hemo-Doc-Stars.

Click here to download the Hemo-Doc-Stars list in PDF format.

What’s the thinking behind this list? Many people who encounter hemochromatosis complain about poor treatment by doctors and clinics. This ranges from ignorance to rudeness to outright malpractice. In fact, a study by America’s Centers for Disease Control and Prevention found that, on average, it took a staggering 9…

Death by Ignorance: Millions of Americans at risk from hemochromatosis, but few doctors know much about it

Hemochromatosis is the biggest genetic killer in North America. Did you know that? Do you know what hereditary hemochromatosis is? Sadly, ignorance of hereditary hemochromatosis, often referred to as HH, is rampant among doctors as well as mere mortals like you and me, leading to countless thousands of preventable deaths every year. Most of those deaths don't come with "hemochromatosis" on the death certificate, but HH is the culprit in many cases of death from liver cancer, heart failure, lung disease, diabetes, and suicide.

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

I'm betting you have heard of them, but guess what? They are all rarer than hereditary hemochromatosis! If you don't believe me you might be tempted to Google "most common genetic disorders" but guess what? Hemochromat…