Hemochromatosis, Iron Overload, Hemopause, and CelticCurse dot org: an update for 2024

A note from Stephen Cobb who launched the website in July of 2010 with this headline: The Work Begins Here: Teaching the world about the Celtic Curse. I began that first article with this statement: "The more people know about hemochromatosis, a genetic condition often referred to as Celtic Curse, the fewer will suffer needlessly and die tragically." That statement remains true today, more than 14 years after I wrote it. The effort to fight hereditary hemochromatosis by informing people about this surprising common genetic mutation—and the potentially fatal condition of iron overload that it can create—needs to continue in 2024.  Thankfully, over the last decade a growing number organizations and online efforts have appeared and expanded to reach more and more people. Here are just a few of them, from around the world: Iron Disorders Institute Haemochromatosis UK The Irish Haemochromatosis Association American Hemochromatosis Society Ca

Why women as well as men need to know about hemochromatosis (haemochromatosis, bronze diabetes, iron overload, Celtic Curse)

Not enough people know this: the most prevalent genetic killer, in America and many "Western" countries, is hereditary hemochromatosis, a condition that's remarkably cheap to treat and may do little damage if detected early enough. Unfortunately many doctors don't know enough about hemochromatosis, and as a result, hemochromatosis often goes undiagnosed, particularly in women, leading to very serious and sometimes irreversible health issues.  The links on this page provide explanations of the hemochromatosis problem, including the particular problem of "hemopause" which is when the symptoms of menopause mask those of hemochromatosis. Let's fight hemochromatosis, the most common genetic killer in the western hemisphere Hemochromatosis + Menopause = Hemopause (and women of a certain age are at risk) What Ernest Hemingway's demise tells us about hemochromatosis

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 , J

Hemopause illustrated: a different view of menopause and iron overload

Just a quick diagram to show the connection between menopause and hereditary hemochromatosis. If you enter menopause with active hemochromatosis—i.e. your body has a tendency to accumulate excessive amounts of iron—and you are not aware of this due to the natural protection offered by your periods, then your doctor may miss or dismiss the symptoms of iron overload. Untreated iron overload can cause permanent damage to your health, but if caught early it can be cheap and easy to treat. For more about hemopause, check out . This diagram was created by Stephen Cobb in 2019, but you are free to reproduce it IF you provide attribution, like this: based on a diagram created by Stephen Cobb.

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

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, ma

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 becom

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

UPDATE! August, 2017: The 23andMe service has resumed provision of HFE status as part of its normal service, which makes the following "hack" unnecessary. For more details, see this 23andMe article .)  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.

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 stagg

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? Hemo

Let's fight hemochromatosis, the most common genetic killer in the western hemisphere

Hereditary hemochromatosis is the most common genetic killer in the western hemisphere. Because hemochromatosis is particularly prevalent in people of Celtic origin, it is sometimes called Celtic Curse. Because hemochromatosis can cause your skin to take on an orange color and is a leading cause of type 2 diabetes, it is sometimes called bronze diabetes (hemochromatosis may be spelled h ae mochromatosis in some countries and called HH or HHC).  You don't have to be Irish to be a victim of this widely under-diagnosed condition in which iron reaches toxic levels in your body and causes crippling disabilities such as: liver cancer, diabetes, congestive heart failure, macular degeneration, and osteoporosis not to mention chronic joint pain, arrhythmia, hair loss, fatigue, infertility, impotence, and depression. With greater awareness and compassion we can defeat hereditary hemochromatosis. Although simple tests for hemochromatosis are available, too few doctors know when

New St Patrick's Day Tradition: Save lives! (with blood tests for iron overload, due to Celtic Curse)

Photo by Michal Osmenda Here is a modest proposal to save lives on St. Patrick's Day, and for years to come:  GET YOUR IRON LEVELS CHECKED! Why? Because too much iron in your body can cause serious damage to joints, liver, heart, brain, and endocrine system. And the leading cause of this "iron overload" is hereditary hemochromatosis, a genetic condition so closely linked to Ireland it is often referred to as Celtic Curse . The classic form of genetic haemochromatosis , which is the Irish-English spelling, is present in 1 out of every 83 people in Ireland and around 1 in every 200 white people of Northern European descent around the world. Note that it can also be present in people who don't self-identify as white. (See  WebMD for more on ferritin tests  and NEJM for prevalence .) If you are Irish, part-Irish, or "Celtic" in the broadest sense of the word, then you should know your ferritin level. Why? Because, if hemochromatosis is discovered early enough yo