Celtic Curse & Iron Overload

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...

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 ...

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...

The following 10 points about "ports" that are installed in patients who need to endure a lot of blood drawing come from my wife, Chey Cobb, who was diagnosed with hereditary hemochromatosis or HH in 2008. As you may have read elsewhere on this site, HH can result in your body having too much iron. This can be measured by checking your ferritin level. Ferritin is "a ubiquitous intracellular protein that stores iron and releases it in a controlled fashion". ( Wikipedia ) The standard treatment for people with excess iron, as indicated by higher than desirable ferritin numbers, is to draw blood. When you give blood it removes iron from your system, and that is one reason the Red Cross does not allow you to give "whole blood" more than every 56 days. But people who suffer from iron overload may need to be bled many times per month for a period of months in order to reduce excess iron (as determined by repeated ferritin tests). The point is, frequent blood dra...

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...

If you or a loved one suffers from hereditary hemochromatosis (HH), you may have experienced the widespread frustration that comes with this condition, frustration that you can't get answers, or treatment, or relief from the damage done by iron overload. One non-conventional medical strategy you might consider is clinical trials. Before you look at how to pursue this option please be advised that it is not for everyone. I think you need a good overall knowledge of human anatomy and biology to navigate this field. Plus some patience: Not all studies will apply to you, for a variety of reasons. The Clinical Trials Site A lot of people don't know that the federal government in America tracks clinical trials online . That link will show you current trials around the world that are related to hemochromatosis. Last time I checked there were 40 of them, with 17 in the United States, as shown here: Here is an example of a trial that is currently recruiting: ClinicalTrials.gov Identifie...

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...

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

Correction: We recently reported that a  respected group of physicians backs universal testing for hemochromatosis . It seems there may have been some errors in that report because the best reference to universal hemochromatosis testing that I have been able to locate is at the CAP, the College of American Pathologists , not the American Society of Clinical Pathologists (ASCP). As far as I can tell the author of the article we referenced had conflated the two entities when citing the American College of Clinical Pathologists. The other error was in thinking that this was a new call for testing for hereditary hemochromatosis. In fact the documentation dates back more than 10 years according to this NCBI citation in its resources for hemochromatosis , not that the age takes away from the recommendation. In fact, the CAP thought that screening with serum transferrin saturation (TS) was the way to go: "Morbidity attributable to hereditary hemochromatosis (HH) is completely preventab...