NEWSWEEK MAGAZINE/November 16, 1998 (on news stands on November 9, 1998)

http://www.newsweek.com/nw-srv/focus/he/he0120_2.htm

Focus on Health

"The Iron Albatross"

Too much of a good thing: Iron overload disease (photo illustration by John Rizzo)

You're rundown. Your knees ache. Your belly hurts. As for your libido, well, you almost forgot you had one. Your doctor tells you to de-stress and prescribes an anti-inflammatory or an antidepressant--maybe even some Viagra. But by blaming your symptoms on middle age, he could be overlooking something far more threatening: a disease called hemochromatosis. Dr.

Kenneth Bridges, a hematologist at Harvard Medical School, calls it "the most unrecognized problem in American medicine."

Chances are you've never heard of hemochromatosis, an inherited tendency to store excess iron in the tissues. The early symptoms are easy to brush off, but the gradual iron buildup can literally rust the body to death. Medical textbooks have long portrayed hemochromatosis as rare, and few physicians know much about it. Yet it ranks as the nation's most common genetic

disorder. Hemochromatosis affects more than a million people--mostly men over 40 and women past menopause, though it can strike earlier. One person in 10 carries a gene for it. The good news is that it's extremely easy to manage, if you're lucky enough to get a diagnosis.

Iron keeps us alive, transporting oxygen through the bloodstream to nourish organs and tissues. We absorb tiny amounts from food, and lose it through sweat, urine and the sloughing of skin cells. Our bodies normally limit the amount we absorb, but people with hemochromatosis lack a cutoff mechanism. The excess iron collects in their joints, resulting in painful and debilitating arthritis. It can also ravage the liver and the pancreas--causing cirrhosis and diabetes--and contribute to coronary disease.

The treatment for this deadly condition is remarkably simple. By periodically giving up a pint of blood, a patient can maintain a normal iron level and a normal life. How much bloodletting is necessary depends on the person's saturation level. After getting an early diagnosis in 1993, Dennis Hohn, a 52-year-old investment broker in Ottumwa, Iowa, had blood taken once a week for five months. Now that his iron level is down, he gets regular checkups and has blood removed only as needed to prevent another buildup. Doctors also advise patients like Hohn to stay away from iron-fortified cereals and from extra vitamin C, which accelerates iron absorption.

Unfortunately, it takes most hemochromatosis sufferers nine years and four doctors to get a proper diagnosis. "There's a reluctance to even consider it," says Dr. Sharon McDonnell, an epidemiologist at the Centers for Disease Control and Prevention. Take Marc Langevin, a 44-year-old mechanic from Springfield, Mass. In the early 1980s, he sought treatment for pain in his hands and knees. A series of doctors shrugged it off, telling him he had arthritis. By the time Langevin was diagnosed with hemochromatosis, 10 years later, his liver and joints had been irreparably damaged. He's no longer able to work.

The key to beating the disease is simply to watch out for it. Diagnosis begins with two simple blood tests. One measures the amount of iron stored in a substance called ferritin. The other gauges the saturation rate of a protein called transferrin, which binds to iron and shuttles it through the body. The primary warning sign is a saturation score of more than 55. After confirming an extremely high score, a doctor may order a liver scan or biopsy to look for organ damage. Labs can now test blood for the genetic mutation that causes hemochromatosis, but it's not a perfect predictor.

If you think you could have hemochromatosis, gather information from advocacy groups, such as the American Hemochromatosis Society (www.americanhs.org) and the Iron Disorders Institute (www.irondisorders.org). The American Liver Foundation (800-465-4837) can also help. Dr. David Witte of the College of American Pathologists urges everyone to have an iron test. And if you discover you have hemochromatosis, alert family members immediately. Marc Langevin's

15-year-old son, Tim, also tested positive for the disorder--but long before any serious damage was wrought. He, at least, has a jump-start on good health.

With Elizabeth Angell

Newsweek, November 16, 1998