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Showing posts from 2012

American College of Clinical Pathologists (ACCP) backs hemochromatosis test for all by 25

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 preventable thro…

The Original Hemo-pause Post: What women of a certain age should know about HH

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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 blood loss that most women have experienced since puberty.
If you have HH the onset of menopause can cause…

National Menopause Awareness Month + Hemochromatosis = $50 off 23andMe gene test

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...(…

Chronic Pain and Hemochromatosis: How bad can the bad news get?

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 blog…

Thank You ABC: For highlighting hemochromatosis (Celtic Curse) on St. Patrick's Day

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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 full…