Posted July 29, 1997
By Steve Stepanek Gazette news intern
Related story: At-home test available

PHOTO: Bob Burgin watches as Jeanne Noble, an oncology nurse technican at Mercy Medical Center, starts to draw blood from his arm. Burgin has hemochromatosis, a condition in which damaging levels of iron accumulate in the blood. (Gazette photo by L.W. Ward)

As a starter on Cedar Rapids Jefferson's 1967 state champion basketball team, Bob Burgin battled some pretty imposing foes, but none compare to his current opponent hemochromatosis. Hemochromatosis involves the body's abnormal absorption of iron, which can lead to serious problems, and it affects approximately one in every 250 people, according Dr. Dean Abramson, the Cedar Rapids gastroenterologist treating Burgin.

"That translates into nearly one million Americans, making it one of the most common genetic disorders in the country," Abramson says, noting that he and each of the other three specialists in his practice are currently treating between three and five hemochromatosis patients. "That's only the tip of the iceberg," he says. Despite its pervasiveness within the general population, hemochromatosis still remains a seriously underdiagnosed condition, he says.

Allowing damaging levels of iron to accumulate in sufferers' bloodstreams, the malady can lead to cirrhosis of the liver, liver cancer, diabetes, heart failure, joint disease, chronic abdominal pain, severe fatigue and increased risk of bacterial infection. Patients are often treated for these symptoms while the underlying cause goes undetected and untreated, says Abramson.

Individuals between the ages of 40 and 60 are most prone to contract the disease, and men constitute the preponderance of clinical cases, Abramson says. "It is a genetic condition that actually strikes men and women with equal frequency, but because women expend much of their excess iron through menstruation, the problem does not generally occur until 10 to 20 years later. "At that age, women may die of other causes before the effects of hemochromatosis manifest themselves," he says.

Indeed, it is the periodic letting of patients' blood a procedure that evokes images of Medieval conjurings and incantations that is the most common, and effective, treatment for hemochromatosis, says Abramson. That is the reason that Burgin, 48, must lie, twice a week, on the sterile sheets of a bed at Mercy Medical Center while a pint of blood flows into a receptacle on the floor.

Little did Burgin know that these biweekly treatments were in his future when he went to his family physician four months ago, complaining of a painful shoulder. "I just thought old age was catching up with me and that I had a touch of arthritis," Burgin recalls. "Fortunately, a blood test that included a screen for iron was ordered. When the results came back, and the iron level was sky high, I was quickly referred to Dr. Abramson." Following a confirmation of the problem with a liver biopsy, Abramson prescribed the bloodlettings to remove some of the iron. Each session lasts about 1½ hours and consists of a lab test to assess whether Burgin has a sufficiently high hemoglobin count to undergo the bloodletting, followed by the actual draining of blood.

Fortunately, Burgin's job as production superintendent at Midland Forge is, as he describes it, a desk job which does not require strenuous labor. "That really helps, because I tend to feel a bit tired on Tuesdays and Fridays."

Hopefully, Burgin will not have to have such frequent bloodlettings in the future. "He is in the first phase of the treatment which calls for a more aggressive approach," says Abramson. This phase typically lasts one year, but can take as long as three years, he reports. After this, when Burgin's overall iron levels return to normal, he can pass into phase two, at which time bloodletting may only be required once every few months. In Burgin's case, passing to this phase may take some time as tests reveal his current level of storable iron to be over 1,300 points (normal is around 20). Abramson is hopeful that Burgin's condition was caught in time and that the bloodlettings will allow him to lead a full, normal life. He also feels that measures should be implemented to better ensure that others don't have to rely on serendipity to find out if they are afflicted.

"A simple step would be to make a screen for iron a standard part of every blood test," says Abramson. "The added cost would probably only be about a buck," he estimates. Further, Abramson thinks that food producers should not provide iron-enriched foodstuffs. "Statistically, men are much more likely to suffer from hemochromatosis than iron-poor blood," he points out, adding that premenopausal women, who often are mildly anemic, can readily incorporate iron supplements into their diets.

As for Burgin, he is committed to getting the word out so that others might be spared the needless pain and death associated with hemochromatosis. "This is one game that we must, and can, win," he says. Seek use for blood taken If a nationwide petition drive has its desired effect on the Food and Drug Administration, the blood taken from hemochromatosis patients may one day be used for donor purposes. "If successful, that would probably give these people a bit of a lift to know that someone may someday benefit from all the bloodletting," says Dr. Stan Eilers, pathologist at Mercy Medical Center.

Unfortunately, current regulations governing donor blood don't permit the use of blood let pursuant to hemochromatosis treatment, Eilers says. For one, many of these patients may not be in the state of health required of donors, he says. Also, donors are limited to the frequency of giving, and hemochromatosis patients often let blood too often. However, that is not to say that all of the blood taken from these patients inevitably has to be destroyed, says Eilers. "Personally, I don't see anything necessarily wrong with using this blood," he adds. "But in the wake of AIDS, the government has understandably chosen to err on the side of being scrupulously cautious in ensuring the quality of the nation's blood supply."

Back to: Health | Gazette Online All local content copyright © 1997 by The Gazette Company, Cedar Rapids, Iowa

At-home test available Posted July 29, 1997 By Steve Stepanek Gazette news intern Related story: Bloodletting is solution

Over 32 million Americans, one in eight, are carriers of the gene that causes hemochromatosism, according to estimates from the Centers for Disease Control and Prevention. To find out if they are carriers, people need to undergo a DNA test, says Sandra Thomas, national director of public education for the Iron Overload Diseases Association. Fortunately, there is a new, less obtrusive way to conduct such tests, she says.

An at-home DNA test for hereditary hemochromatosis is now available from the DNA Diagnostic Laboratory at Michigan State University, East Lansing, Mich., Thomas reports. The favorable aspects of this new method are as follows: A doctor's order is not needed to receive a test kit. DNA is gathered by a painless cheek brush, not a blood draw. The test can be conducted in the privacy of the home. Results can be sent directly to the home within seven to 10 days. "I am particularly excited about the ramifications of this testing in helping to identify children who have iron overload," says Thomas. "With no needles or office visits, this test will be very appealing to many parents and their children."

The test costs $78 per patient, but a family rate $69 a person for 10 to 14 family members in one order is also available.

Those interested in more information on the test may call the lab at (517) 353-2032, says Thomas.

Back to: Health | Gazette Online All local content copyright © 1997 by The Gazette Company, Cedar Rapids, Iowa Used with permission.