Showing posts from 2010

Coffee, Tea, Fe? The truth about meal-time iron absorption

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

The Iron Conference Report and Some Celtic Curse Support Notes

This is the first version of a post that will become longer when I get a chance to write more. As some readers will have noted from my tweets ( follow @CelticCurse on Twitter) the second weekend of October put me in Charlotte, North Carolina, for the Iron Conference, an event put together by the Iron Disorders Institute , an organization that has pioneered awareness of hemochromatosis an other iron-related disorders. The Iron Disorders Institute was co-founded by Cheryl Garrison who has led patient advocacy for hemochromatosis sufferers for over a decade. The Iron Disorders Institute website contains a wealth of medically reviewed information about hemochromatosis, although you sometimes you have to dig a little to find it (there are a lot of PDF files there which you can download). The organization is working on making the information more accessible and is developing a new site specifically for hemochromatosis: The Hemochromatosis Information Center . We strongly recommend you chec

Dealing with The Damage Done: A recurring theme in hemochromatosis victims

I want to talk about an aspect of hemochromatosis that I refer to as "The Damage Done." When I read the comments on this blog and on the Hemochromatosis page on Facebook , they bring home to me the fact that there is a whole other side to hemochromatosis awareness. You might even call it the dark side. [But before going any further I want to take a moment to thank everyone for their participation on the site here, and over on Facebook , as well as on Twitter . When you talk about any kind of awareness raising these days, those online numbers count. The more people who follow @CelticCurse on Twitter and who like the Hemochromatosis page on Facebook , the more we stand a chance of exerting pressure on doctors and researchers. And the better we are able to get out the word to the millions of Americans who are at risk but have not yet heard of this most common of deadly genetic conditions.] The Damage Done is a term I use to describe the delayed effects of hereditary hemochromat

Menopause or Hemo-pause? What women of a certain age need to know about HHC

September is Menopause Awareness Month . Regular readers of will know that July was Hemochromatosis awareness month. So why is this website--devoted to raising awareness of Celtic Curse or hereditary hemochromatosis (HHC)--talking about menopause? The answer is: hemo-pause . What is hemo-pause? It's a term we coined for a syndrome which afflicts women entering menopause with undiagnosed hemochromatosis. There are 5 elements of hemo-pause

Celtic or Viking, a Curse is a Curse: Hereditary hemochromatosis, firewalls, and genetic killers

I just found an interesting academic paper from 2006 that discusses the genetic origins and spread of hereditary hemochromatosis (HHC). Was it the Celts or the Vikings, or the Irish Gaels? Of course, depending on your view of life this question might be exciting or boring; and I would be the first to understand if people suffering from "Celtic Curse" found a discussion of the exact origin of this potentially deadly genetic defect to be, how shall I put this? Academic. However, there are some implications in this article for the mission of Saving lives by raising awareness of this condition. In my opinion, one of the main reasons that treatment and diagnosis of hereditary hemochromatosis is inadequate in some countries is 

Hemochromatosis Symptoms: What NOT to expect

Describing the symptoms of hemochromatosis can be tricky. As we have noted elsewhere:  “Early signs and symptoms of hereditary hemochromatosis mimic those of many other common conditions, making it difficult to diagnose.” (Mayo Clinic) Adding to the challenge is the fact that not everyone who has HHC exhibits every symptom of HHC. For example, the bronze skin discoloration that gave rise to one of the earliest terms used to describe this condition--bronze diabetes--may be present in as few as 25 percent of patients.

Difficulty Getting a Diagnosis of Hemochromatosis (and other damage done)

Back when I was writing about hemochromatosis on my personal blog I got a lot of questions about diagnosis. I thought I would share how I tried to answer them. For example, Stacey asked "How was your wife diagnosed?" Here is how I responded:

Excellent Video Introduction to Hemochromatosis: From one of the world's leading experts

Here's some good news for anyone trying to understand hemochromatosis, the most widespread hereditary disease in the Western world: a one hour video-taped lecture from one of the world's leading experts on the subject, Professor Martina Muckenthaler, PhD., Head of Molecular Medicine at the University of Heidelberg. What is particularly awesome about this video is a. the English subtitles, b. the professor's superb  pedagogical style as she leads her audience of university students from a simple introduction to hemochromatosis to a detailed explanation of its mechanisms at the molecular level. Even if you watch just the first 15 minutes you will get a good sense of why the world needs to know more about haemochromatosis (the British English version of the spelling is used in the subtitles). Here at Celtic we are the first to admit that hemochromatosis is not easy to explain (and we've spent a lot of time trying to explain it). So we were delighted to encounter

July is Hemochromatosis Awareness Month

"Did you know that July is National Hemochromatosis Awareness Month?" That simple sentence is all you need to start a conversation about the Celtic Curse. Some people may respond with "Hemo-what-osis?" and that's when you hook them with "You know, Celtic Curse?" We've struck up conversations like that with lots of different people and so far nobody has objected. Most people are fascinated to learn more about a potentially fatal condition, one that might run in the family, might be killing relatives, and might explain why Uncle Fred had cirrhosis of the liver even though he swore he never touched a drop. (Here's a hint: Uncle Fred might have been telling the truth--while drinking to excess is never a good idea, hemochromatosis can damage your liver in ways that mimic the effects of alcohol consumption.) If you want some talking points, or feel like taking the message to the streets, there are several documents you can download from the Iron Diso

A Pioneer Passes: Mr. Iron pioneered phlebotomy treatment for iron overload

The New York Times is reporting that Dr. Clement A. Finch, a pioneering hematologist whose research on iron helped improve nutrition and led to advances in diagnosing and treating anemia, died June 28 at the age of 94. He was dubbed "Mr. Iron" by his colleagues. As some readers may know, Dr. Finch played a pioneering role in the study and treatment of Celtic Curse, "showing that hemochromatosis, a genetic disease that causes the body to absorb too much iron from food, could be treated through periodic bleeding. The excess iron can damage the heart, liver and pancreas." You can read the Times obituary here .

Damage to the Eyes: One more way the Celtic Curse may harm its victims

Here's some news you may not want to hear about Celtic Curse, already known for its negative impact on the heart, liver, and other organs: "The most common--and under-diagnosed--genetic disease in humans just may be a cause of the worst form of macular degeneration." That's according to Medical College of Georgia researchers. You can read the full story at the Medical College of Georgia website . However there could be a silver lining as a result of these new findings. But first, more of the bad news: "[researchers] are pursuing a link between hemochromatosis, which results in iron overload, and the wet form of macular degeneration, the leading cause of blindness in people 60 and older. They suspect that too much iron, known to wreak cumulative havoc on the body's organs, hastens normal aging of the eyes." The silver lining? This could bring a whole new branch of medicine--eye care--into the movement backing more, better hemochromatosis screening. The fu

Save Lives! Defeat Hereditary Hemochromatosis

Hereditary hemochromatosis, it's what killed Hemingway! Hemochromatosis is the most common genetic killer in America, particularly prevalent in people of Celtic origin, but you don't have to be Irish to be a victim of this widely under-diagnosed condition which causes crippling disabilities such as:

A Call for Widespread Hemochromatosis Screening in Scotland: Study could prove value of screening

As you may have figured by now, here at we are big believers in more widespread hemochromatosis screening. The cost of catching hemochromatosis early is way less than caring for someone suffering the effects of untreated hemochromatosis. So we were interested to read this article in The Scotsman , an excellent Scottish newspaper (note the spelling of haemochromatosis): People should be routinely screened for a dangerous genetic which could afflict one in 200 Scots, a campaign group said yesterday. Described by some as the "Celtic curse", haemochromatosis is a genetic condition prevalent in Scotland, Ireland and other northern European countries which causes iron to build up in the body. The article goes on to describe how the head of the Haemochromatosis Society, George Scott, appealed to the Scottish Parliament to institute testing that could save lives. Apparently Members of the Scottish Parliament (referred to as MSPs) said that they will "ask health s

One Celtic Curse Story, Part 1: The Thanksgiving Diagnosis

Finding out that you have a potentially fatal genetic condition might not seem like good news, but when that condition makes sense of a lot of previously bewildering health problems, you might just be thankful for that news. [The following was first published on my personal blog , in November of 2008. I plan to post the rest of the story as time permits. Just to be clear, I'm not the one with hemochromatosis; it's my wife, Chey.] I have been trying to find the right way to write this post for about two weeks. Now we've arrived at the time of the year when it's traditional to speak of things for which we're thankful, I figured I would put it like this: I am thankful for a diagnosis, even though that diagnosis is hemochromatosis. That might sound strange given what is written on the cover the "bible" of hemochromatosis, The Iron Disorders Institute Guide to Hemochromatosis : It's Real • It's Common • It Can Kill You And it's all true! If left unt

An Irish View of the Celtic Curse: Hereditary Hemochromatosis

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

The Work Begins Here: Teaching the world about the Celtic Curse

The more people know about hemochromatosis, a genetic condition often referred to as Celtic Curse, the fewer will suffer needlessly and die tragically. The only real obstacle to universal detection, treatment, and elimination of this potentially deadly condition is a lack of information among doctors and among the general population. So here's what you can do to save lives right now: Tell people about hemochromatosis. Ask your doctor about hemochromatosis. Hand out hemochromatosis flyers. Post hemochromatosis posters. Follow CelticCurse on Twitter Tweet this web site. We will be announcing more ways to help soon, and generating some exciting new literature for you to distribute. Right now here's a link to 3 brochures and 2 posters you can download and print, from the great folks at Iron Disorders Institute.