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 CelticCurse.org: 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  a general failure to grasp just how widespread the condition is. We are talking about a genetic defect carried by 10% of the American population and afflicting more people than Down syndrome, cystic fibrosis, or sickle-cell disease. Please note that I am not suggesting one disease is more deserving of attention, treatment, or research than another. I'm just saying that it is worrying--and puzzling--that the public knows less about HHC than it does about some conditions which are less prevalent.

I've thought about this a lot in the 20 months that have passed since my wife was diagnosed with HHC. One factor in the lack of HHC awareness struck me recently when I was talking about firewalls--yes firewalls--those things you use to protect computers from each other. What do firewalls have to do with hemochromatosis? Simply put, they prove that a well-chosen word or phrase can effectively communicate a complex concept, facilitating widespread understanding of that concept. (I don't think "hereditary hemochromatosis" conveys a whole lot about the condition it names, nor does it roll off the tongue or lend itself to instant recall.)

As it happens, my wife and I were heavily involved in computer security during the time that firewalls first appeared on the market. We had the pleasure of getting to know--and learn from--some of the founders of the firewall industry. We also had a front row seat at the phenomenal launch phase of this security technology.

I helped to organize the first commercial firewall conference and trade show in January of 1996, and I was one of the speakers. I can tell you there were people at that show buying firewalls before they even knew where to put them, so powerful was the idea that this technology could keep the bad guys out of your network while still allowing you to connect that network to the Internet (which just about every organization was doing for the first time back then, from companies to government agencies, universities, charities, and so on). I think Celtic Curse has similar power to popularize a complex concept. To me, Celtic Curse conveys the following things:

  • it is something bad,

  • it has a genetic component, and

  • it can be defeated (lifted, alleviated).

However, there is a potential drawback to using Celtic Curse as a term for HHC, namely a narrow identification with a particular group of people, i.e. the Celts. Although findings in the emerging science of genetic archeology suggest "Celtic" could apply to a very large group of people, there is a popular perception of Celtic as a fairly narrow ethnic group (namely Irish, Scots, Welsh, and Breton). In fact, the C282Y mutation at the heart of HHC is present--in varying degrees--across Europe and prevalent in parts of Scandinavia. Yet Vikings are not commonly considered to be Celts.

Nevertheless, we decided to name this website CelticCurse.org. Our cause is Fighting Celtic Curse and our call to action is Fight Celtic Curse! We think that Celtic Curse is a term that people can remember. It evokes key aspects of the phenomenon that it names and it will help spread awareness of the condition. Sure, you can become a victim of HHC even if you have no known connection to Celtic lineage, Celtic language, or Celtic anything else. Then again, a computer firewall doesn't stop fires, it controls the flow of network traffic, and was a big help in popularizing the idea of doing just that.

To me, the possibility that Vikings spread the C282Y mutation is inherently interesting. Discussion of this possibility helps spread awareness of what the C282Y mutation does. So, I am happy to highlight this article, which is worth reading if you want to dig a little deeper in to the question of how Celtic HHC really is. The title asks a question: "Was the C282Y mutation an Irish Gaelic mutation that the Vikings help [sic] disseminate?" The author is C.A. Whittington of the University of British Columbia, Canada, and it was published in Medical Hypotheses (2006) 67, 1270–1273. You can read an Adobe .pdf file of the article here.


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