Celtic Curse & Iron Overload

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...

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...

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...