The Sun
Sunnyvale's Newspaper

Sister's sacrifice may save siblings' lives

By Ingrid McCleary

It started when my sister began feeling tired and weak all the time, and her skin developed dark splotches. Thinking she might be anemic, she swallowed vitamin pills loaded with iron to give her more energy. Little did she know she was poisoning her body.

Then she came down with the flu. A week passed, then two, then a month and still the temperature lingered. She went to the doctor again.

They did blood test after blood test and finally came up with a triple-whammy diagnosis: a kidney infection, hepatitis C and hemochromatosis.

I knew about kidney infections, had even heard about the recent cases of hepatitis C, but the only part I recognized in hemochromatosis was "hemo," which I knew had to do with blood. But it was hemochromatosis that set off and worsened the first two ailments.

Hemochromatosis is a blood disease that causes the body to absorb too much iron. Iron first accumulates in the liver, then moves on to other organs, and if the disease is left untreated, the patient dies.

The normal iron count in the average body is 35 to 160. Hers was 845.

When she described the treatment, the image that popped in my mind was a medieval sketch I'd seen of a woman in bed, her arm flung over the side, her wrist slashed, and the doctor crouching nearby with a bucket to catch the virus-laden blood--bloodletting, an iffy treatment because it renders the patient even weaker than before. But sometimes it works. And in the case of hemochromatosis, it works wonders.

They began bloodletting once a week, but moved it to every other week, then every three weeks. Why? She was getting too anemic. This seemed the epitome of irony. How could you have too much iron in your body and still be anemic? Because iron entered the liver and there it sat, preventing absorption.

Besides sharing this sad news, she had to tell me to get my blood checked because hemochromatosis is a genetic disease. My kids, she assured me, should be OK, because my husband didn't have the gene and it took two genes to activate the disease.

This last information spurred me to investigate further. The more I read, the more concerned I grew. How could I have reached the age of 41 without ever hearing about the most common genetic disorder in the United States?

How could 1.5 million people in the United States be affected by iron overload diseases and a million not even know it?

Because it usually strikes people in their 40s. It hits men more than women. And it's usually not caught by doctors. Because the simple blood test is not included as a standard when you get blood work done.

Here's how the numbers break down: one in 10 people carries the single mutant gene, which won't cause you any harm--unless you happen to have kids with someone who also has the gene. Then your children have a 1-in-4 chance of inheriting both genes. One in 200 people carries both genes, which puts them at risk of absorbing too much iron. Six in 100,000 will contract the disease.

So in Sunnyvale, about 12,925 people carry the single gene, 646 carry both genes, and eight people have the disease and probably don't know it.

Here is a disease that, if caught before liver damage occurs, is 100 percent treatable, giving the patient a normal life expectancy. The blood test can be done when you get your cholesterol levels checked. Any abnormal counts would alert the doctor. Your history would be noted, further tests taken and if diagnosed, bloodletting prescribed.

The bloodletting continues until the patient's iron count falls in the normal range, and then annual blood checkups are all that's needed to keep track of the levels. At this point, only occasional bloodletting is required.

That is, if they diagnose it in time.

In my sister's case, they didn't. In two months, my sister's iron count went from 845 to 425. But the damage has been done. She has cirrhosis of the liver. So much damage, in fact, that she needs a liver transplant to survive.

My sister is six years older than I am. Being the oldest of five, she's made many sacrifices paving the way for the rest of us.

We're all trying to find multi-vitamins without iron. We've all had our blood checked. We're all OK--so far. My iron count is a bit high and I'll have annual checkups, but if anything develops, the bloodletting will prevent any liver damage, and I'll have a normal life span.

She didn't have to make this sacrifice. A simple blood test could have saved her. Will someone please tell the doctors?

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This article appeared in the Sunnyvale Sun, March 25, 1998.
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