A Patient's Story

Tim Casey:
Living with Hemochromatosis

Tim Casey of Chandler, Arizona , the father of two young daughters, worked as a software engineer at Motorola. In 1990, on a routine medical check-up, he was diagnosed with hemochromatosis. "Fortunately for me," Tim said, "my physician had just added a test for hemochromatosis--the TIBC, or total iron binding capacity--to his standard screening, otherwise I never would have been diagnosed. This test, along with testing for iron levels in the body, can provide a definitive diagnosis for hemochromatosis."

"I was shocked to learn that I was sick," Tim, now 38 years old, recalled. "I hadn't felt sick at all. But now things I couldn't explain made sense to me. For example, I was always tired. When I came home from work, I just wanted to sit, while my friends, who were the same age I was, had the stamina to go out and play soccer. I couldn't figure out where they got the energy!

"I had never even heard of hemochromatosis," Tim continued. "Even though my doctor said it was genetic, we didn't think anyone in the family had ever had it. Later on, though, I learned that two of my grandparents--one on each side of the family--had died of it."

Because Tim's blood contained very high levels of iron, a liver biopsy was performed to evaluate liver damage. Tim was relieved to learn that there were no signs of cirrhosis. His doctor advised a series of phlebotomy treatments aimed at reducing iron in his blood. Twice a week for five months, a pint of blood was removed from Tim's body. "It was unpleasant and exhausting," Tim said. "I'd go to the doctor's after work, after work, give the blood, go home, and go straight to bed." Once Tim's iron was down to normal levels, the phlebotomy treatments were cut back to their current level of eight treatments a year.

"When I found out I had hemochromatosis, my first fears were for my children," said Tim. "I thought, 'Oh, no, what have I done to them?'" The Caseys immediately had both children tested. Their oldest daughter's iron levels were slightly elevated, and doctors will be checking her periodically.

Today, Tim feels healthy and suffers no ill effects of his disease. "Having hemochromatosis has really changed my life," said Tim. "Now I want to help any way I can to try and find a cure for it." Since learning of his diagnosis, Tim has become involved in support groups and national organizations, including the American Liver Foundation, to help promote an awareness of hemochromatosis.

"The earlier hemochromatosis is diagnosed, the better a patient's chances of survival," said Tim. "We are trying to spread the word about the importance of testing, particularly the TIBC screening."

Newsletter of the American Liver Foundation.1995

Read the above story & more on hemochromatosis at the ALF website.  http://www.liverfoundation.org/html/communi_nu.htm