[APG Public List] Hemochromotosis, a genetic disorder

Craig Kilby persisto at live.com
Thu Jun 24 19:15:20 MDT 2010

I alluded to this condition in an earlier email and said I would address it in a serious fashion later. Some will consider it off-topic, but this will be the same group of people who think discussing the Revolutionary War is too political. (Yeah, well, it was very political. And God forbid we talk about the Civil War.)

Hemochromotosis is a little known body disorder whereby the the liver does not process the iron in food. It is little understood but is not really very uncommon. There are plenty of web sites out there to explain it all to you. Some (most) are rather hysterical. I don't mean "funny" but over-alarming.  What I am writing here is merely what I have learned about this, since I suffer from it.

First, it is hereditary. While I only carry a recessive gene, I still have it, and my oncology doctor in Richmond explained to me that even though it is a recessive gene, too little is known about how genes communicate with each other, and that it is indeed genetic.

I only found out about it because my ferratin level in a routine blood test to have my high blood pressure meds renewed threw up a big red flag.  Actually, this should have come up a long time ago, but it is so routinely dismissed...well that is another story. Suffice it to say that the "normal" iron levels vary quite a bit. But in this last case, they were off the chart.

This caused me to write to my immediate family to encourage them to get tested. This primarily affects white males of European descent--about 15% actually, according to what I know about it. This is not to say it does not effect females, or that females are not gene carriers. Bear with me on this point.

It takes a very long time for iron to build up in the body. Those who give blood routinely and, for natural reasons that only apply to women, it is not usually detected until later in life.

For males, it will usually show up around age 50. Which is exactly how old I am. It is easily treatable but the only treatment is to give a pint of blood every two weeks until the ferratin level comes down. My doctor want it down to 50. (It started at 790).  I'm about there. The condition does not go away and has to be treated for the rest of one's life.

Now, the genetic side. having warned my family, my brother in St. Louis had a DNA test and full blood panel test made. He has this disorder full blown, both genes (i.e., mother and father) and was way off the chart. He is now undergoing treatment.

My main point here, if I am allowed to make one without offending the Thought Police, is that people need to have annual blood tests done. Any one of many things could be wrong and you would not even suspect it. This is one example of a purely hereditary disorder that can be easily diagnosed and treated.

If not treated, the consequences are fatal and often lead to misdiagnosed ailments. Excess iron deposits itself in vital body organs: the kidneys, spleen, pancreas, liver and heart. Fortunately, the sonograms and EKG showed that I was relatively very healthy for my age. Foods to avoid are red meat and spinach. Beverages to avoid are orange juice and alcohol. Especially alcohol. (AS IF...keep drawing blood!)

My Doctor advised me to unsubscribe from volatile list serves like APG to help control the high blood pressure.  (OK, if you've read this far you know I am jesting.)

I have not spell checked nor proofed this message. Please do not reply with comments about missing words and improper grammar. When I need and editor, I know plenty of them. I wanted to get this message out there because I believe it germane to the subject of genealogy and particularly to all of my friends' health.

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