Celtic Curse & Iron Overload

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...

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 ...

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...

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 rep...

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 stag...

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...

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...

Could extra iron in your body help you grow taller? Yes, according to a study cited recently in the New England Journal of Medicine. And taller is better, right? By many accounts it is, bringing greater earning power in many countries (there are a few downsides, so to speak, such as trying to relax in one of today's airline seats). The tallest people, by country, are the Dutch, followed by the Norwegians, Serbs, and Swedes (if you find this stuff interesting there is a great chart in Wikipedia ). The Celts of old, namely the general population of northern Europe several thousand years ago, were notably tall. Julius Caesar wrote that Celts looked with contempt on the short Romans. This fact is noted by the two doctors who carried out recent research on iron overload and height in Switzerland: Increased Height in HFE Hemochromatosis (Pietro E. Cippà, M.D., Ph.D. and Pierre-Alexandre Krayenbuehl, M.D.). Their finding? Hereditary hemochromatosis can make you taller. Of course, if yo...

PLEASE NOTE: This article does not say Randy Travis has hemochromatosis. As you may know, Randy Travis is a successful American country music singer, songwriter and actor (if you didn't know, check out the Randy Travis page on Wikipedia). You may also know that Mr. Travis has had some serious health problems of late, notably a stroke and brain surgery after being admitted to hospital in Texas with  presumptive cardiomyopathy and congestive heart failure . Naturally, I was saddened to hear of Mr. Travis' health problems, particularly since they are pretty severe for someone who is relatively young (when you get to 6o, as I did recently, then 50-something is relatively young). However, what made me sit up and pay close attention was three pieces of information: An article I had recently read, about cardiomyopathy and hemochromatosis. Mention of a family history of heart problems by one of the doctors treating Mr. Travis. The Wikipedia reference to the fact that Mr. Travis ...

On the website Yahoo! Answers , I recently saw a question about hemochromatois that I thought I could answer. someone had written "Haemochromatosis: told I may have it, does anyone know anything about the testing scale for it?" There was a more specific question: "the haemochromatosis result was something like 145, thing is the hospital here only run further tests (genetic test according to the nurse) if the result is higher than 170 or something." I spent about an hour or so writing an answer, only to find that, when I went to post the answer, the question had been closed to further answers. Darn! But then I thought, why not post the answer here, since it seems to come up quite often. So here's what I wrote: Testing for hemochromatosis (haemochromatosis) Hemochromatosis is "a disease that results from excessive amounts of iron in the body (iron overload)." That's the definition used by the Iron Disorders Institute , a non-profit group in America t...

As you may have noticed, most of the pages here at Celtic Curse have been unavailable for a number of days. That's because some thoughtless cyber criminals had attacked the server on which this website is stored and installed their own malicious code. That code was then used to launch attacks on other websites. The attacks came to the attention of the hosting company from which we rent our server. The company disconnected us from the Internet. Unless you are a thriving enterprise, you are not likely to have access to the extra resources required to cover from something like this. Fortunately, we were able to get the advice of friends and clean up the server, reinstall this site, and bring it back online without losing any information. At the same time we put some new security measures in place to help prevent this from happening again. We will try to pay more attention to the site in the future and keep the helpful content coming. Thank you for being patient. (I am reminded that ma...

September is National Menopause Awareness Month and what better way to mark the occasion than getting your genes checked for hereditary hemochromatosis. Why? Because menopause ends the monthly blood loss that can mask the most common deadly genetic condition in America: hereditary hemochromatosis (also called iron overload, Celtic Curse, bronze diabetes, or HH and HHC for short). If you were born with hemochromatosis, sometimes described as a defect of the HFE gene, menopause can cause your body to start accumulating toxic levels of iron, resulting in chronic fatigue, serious joint pain, liver damage, diabetes, depression, loss of libido, migraines, and worse. Why should I get my genes tested for hereditary hemochromatosis? Getting your genes tested for hereditary hemochromatosis could actually save your life! And right now, during National Menopause Awareness Month, there is a way to get your genes checked for HH for $50 off the normal cost. Let me explain why this is so important....

Hemochromatosis can create and/or exacerbate a lot of problems for your body, including but not limited to diabetes, liver disease, liver cancer, heart disease, and joint/spine problems. The last item, which can produce deep and unrelenting pain, is sometimes overlooked in the general "What is Hemochromatosis?" literature. There may be a good reason for this: Raising awareness of a problem--and hemochromatosis is nothing if not a problem--requires a delicate balance between good news and bad news. I am deeply familiar with the good/bad news balance from my decades of work in computer security awareness. Indeed, my current job title is Security Evangelist, and my tag line is "I bring you good news about Internet security, as well as some bad." (FYI, the Celtic Curse website is something I do in my own time and the views and opinions stated here are mine and not those of my employer.) As an example of this form of evangelism, last week my colleagues and I put up a blo...

This is great! A news organization making the connection between Celtic curse, St. Patrick's Day and hemochromatosis . Please share this story with friends (a more complete blog post on this is in the works). The more people know about this condition the better. Celtic Curse is a leading cause of diabetes, liver cancer, joint pain, and heart disease. Yet it is easy to treat, by giving blood. Hemochromatosis Heroes like Dr. Martin L. Alpert , a family practice physician in Santa Monica, Calif., deserve national recognition for insisting that routine physical exams include inexpensive tests of serum iron and iron binding capacity, used together to calculate iron saturation. Why? "because I picked up two or three cases a year for probably the last 25 years." Such a simple way to avert needless human suffering, not to mention the medical cost savings, clearly in the millions at this one practice alone when you consider the alternative, treating 50 people suffering from fu...

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 c...

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 o...

Imagine the shock of getting a call from the intensive care unit of your local hospital telling you that your brother has been admitted. The doctor says your brother is delirious and combative and "in the throes of advanced alcoholism." Furthermore, he has cirrhosis of the liver, internal bleeding, and ketoacidosis—a medical emergency in which a shortage of insulin can lead to coma or death—from newly diagnosed diabetes. If you've never thought of your brother as an alcoholic such a call could be both shocking and disturbing. Of course, the story gets even more worrying if your brother turns out not to be an alcoholic. But such is the story told in this excellent Washington Post article about an almost fatal failure to diagnose hemochromatosis. Several things struck me when I read this article, in addition to feeling terrible for Jeff Williams, the subject of the story, and his family, who are now living in the shadow of hemochromatosis. For one thing there is an amazing...

President Obama arrived in Ireland today and although the main focus of his visit is diplomacy, he is also set to connect with his Irish roots. He will visit the village of Moneygall in County Offaly, home to just under 300 people, some of whom are distant relatives of the President (as reported by Christian Science Monitor ). Which brings me to the point of this blog post: An Irish heritage can be a wonderful thing, but it can also come with a down side, one that goes by the name of hereditary hemochromatosis, a.k.a. Celtic Curse. Although a lot of websites say that hemochromatosis is rare among people of African descent, this potentially fatal iron disorder is not that rare in people who self-identify as black and/or African American. So the Celtic Curse blog would love to see President Obama get tested for mutations of the hemochromatosis (HFE) gene and share the results of his test as a way to raise the world's awareness of this widely under-diagnosed and potential...

This post is a quick update to let you know we're still here and still working on raising awareness of hemochromatosis, even though the twin demands of the "day job" and coping with HH have been taking up most of our time (that's why there's no fancy image to go with this post). Fortunately, we are not alone, and hemochromatosis sufferers don't have to go it alone. There are places to turn for advice, insight, support, and maybe even a smile or two. Places like My Dog's Teeth, a blog written by Cristi-Rae Baird, a young Canadian HH patient. Here are links to Cristi's site and several other HH-related places you might not know about. They are all worth checking out. The My Dog's Teeth blog: Cristi's personal account of living with hemochromatosis (and a dog). Cristi's in-depth interview with Jillian is well worth reading. The MisAdventures of Bad Boy Kimball : a personal blog from Steve Kimball, writing about coping with hemochromatosi...

A simple genetic test is all it takes to know if hereditary hemochromatosis, the most common genetic killer in America, is in your genes. Your doctor can order this test or you can order the test yourself, direct from a reputable testing service. But that may change. The Food and Drug Administration is seriously considering making some health-related genetic tests prescription-only. In other words, you would need your doctor's permission to get this and other tests. In some cases the results would go to your doctor, not you. We don't think such restrictions are needed. We think they would be detrimental to the public good and increase the cost of health care.  So we have organized a petition to express these views to the FDA. If you agree, please sign the petition . Why Consumer Access to Genetic Tests Matters to You Sadly, many doctors are overworked these days and simply lack the time it takes to stay abreast of the latest developments in genetics. We feel tremendous sympathy...