Celtic Curse & Iron Overload

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 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...

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...

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...

Hemochromatosis can be a very frustrating condition, not only physically and psychologically, but informationally. Finding useful information about hemochromatosis can be tricky, even with the power of Google and Bing at your disposal. For a start, a lot of stuff is filed under haemochromatosis, which tends to be the UK/EU spelling. So, from time to time here on Celtic Curse we will be highlighting hemochromatosis sources that we think are particularly helpful. The first of these is from MedlinePlus from NIH .  A service of the U.S. National Library of Medicine at the National Institutes of Health. This page has links that cover the basics through to research and some cool tools. We have direct links to the sections here: Basics Overviews Diagnosis/Symptoms Treatment Learn More Related Issues Multimedia & Cool Tools Tutorials Research Clinical Trials Genetics Journal Articles

Update, October, 2020: Please visit hemopause.org for a more recent account of this syndrome. Back at the beginning of September, 2010, I found out that September was Menopause Awareness Month. This rang a bell, and not just because I had recently written several articles related to Hemochromatosis Awareness Month, which is July. I had also been monitoring traffic on the hemochromatosis page on Facebook and noticing a trend, something I dubbed hemo-pause . Here is the first blog post I wrote about this, edited slightly to improve readability: What is hemo-pause? It's a term coined for a syndrome which afflicts women entering menopause with undiagnosed hereditary hemochromatosis, often referred to as HH for short There are 5 elements of hemo-pause Women with HH may not process iron properly which can lead to toxic iron accumulation. Regular blood loss is the best known means of preventing the toxic iron accumulation caused by HH. Menopause slows and then stops the regular 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...

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...

Defeat hemochromatosis? In one year? Surely that's impossible? Well, the key to defeating hemochromatosis is making everyone aware of the condition. I'm talking doctors, nurses, family, friends, the person seated next to you the next time you fly. Hemochromatosis accounts for more cases of diabetes, arthritis, heart disease, liver disease, depression and suicide than anyone has so far cared to calculate. Why? Because not enough people know enough about it. So how about this: You are one person, but this year you resolve to tell ten people about hemochromatosis, and you ask each of them to tell ten people. We can call it the 1+10 program, and 1+10=11, and this is 2011. By the time 2012 rolls around the world could be as aware of hemochromatosis as it is of cystic fibrosis (a terrible genetic condition, but one which is far less common than hemochromatosis). On a more personal note, one of the many unwelcome things that hemochromatosis can do to a person is slow them down. Would ...

Does drinking coffee or tea with a meal reduce the amount of iron your body absorbs from the meal? That question is the subject of this post and a matter of concern for two groups of people: those with too much iron, like hemochromatosis sufferers, and those with not enough iron, like people with anemia. BTW, that headline is not a typo, it is a clever pun, or so I thought. Apologies if you already spotted the connections but it is based on a great line from the 1980s Melanie Griffith movie "Working Girl" in which Cynthia the secretary, played by the incomparable Joan Cusack, delivers the following line to Mr. Trainer, the handsome executive played by Harrison Ford: "Can I get ya anything, Mr. Trainer? Coffee? Tea? Me?" So I replaced Me with Fe, which is the symbol for iron in the periodic table of the elements. That is most of the pun (perhaps not such a funny one since I felt I had to explain it). The other part is that the great Cusack acting dynasty, including J...

Over at the very informative website of the Iron Disorders Institute there was a link to a story about hemochromatosis in an Irish newspaper. Since hemochromatosis is known as the Celtic Curse--on account of its relatively high rate of occurrence in persons of Celtic ancestry--I thought this article would be an interesting perspective on my wife's condition. I also realized it could be a story that you would have missed if you just searched the web for hemochromatosis. That's because the article spells hemochromatosis as haemochromatosis, which is sometimes the case outside of America. How Irish is the Celtic Curse? Across Europe as a whole the chance of someone experiencing iron overload is one in 400; in Ireland, it's almost five times higher at one in 83. And one in five people in Ireland carry the gene that can lead to this condition. Of course, the problem is not confined to the Emerald Isle. With so many people having emigrated from Ireland to North America over the...