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Real Stories from People living with Hemochromatosis

Dr. Shaun Carpenter's Story

Photo: Shaun Carpenter

"It all started with my brother and me. Neither one of us had ever heard of hemochromatosis. But that was about to change…"

"I got a phone call from my brother Stephen one day. He had joint aches, fatigue, and a number of other vague symptoms that were getting worse. He always seemed to have a lot of complaints, and I felt he had been a hypochondriac for years. My efforts to communicate this to him were met with the usual resistance. I was upset that as a physician, he wouldn't listen to me. And he was upset that as a patient, I wouldn't listen to him. "

"Sometime later he called me up again and said he was going to get his iron levels tested because no one had ever checked them before. I thought to myself, here we go again, another wild goose chase. He went to several doctors until he finally found one who was willing to write the prescription to get his iron level drawn."

“To my chagrin, Stephen’s iron levels were through the roof. He was subsequently diagnosed with hereditary hemochromatosis. My brother pestered me to get my own iron levels checked, and lo and behold, I was positive for hereditary hemochromatosis as well. My chagrin turned to shame. My brother’s years of complaining had led him on a search which saved not only his life, but mine as well."

“Hemochromatosis causes extra iron to gradually build up in the body’s tissues and organs. After many years, the excess iron becomes toxic—causing a slow death where the body literally rusts from the inside out."

“The main treatment is getting your blood drawn to get the iron out of your system. It's interesting that a therapy like blood-letting used back in the dark days of medicine turns out to be the treatment for many who have hemochromatosis. Another way you can get your iron levels lower is by controlling how much iron you eat. When I realized that my iron level could be lowered by altering my diet, I was relieved because it gave me a sense of control."

“Many people erroneously think that hemochromatosis is a disease that you can catch. You can't get it from rubbing up against somebody. It's a genetic disorder. Hemochromatosis is passed down to you from your parents. But if you find out you have it at an early age you can develop the right habits to live a long and healthy life."

“My brother Stephen taught me a lesson and humbled me as a doctor. As a result of his persistence, we can help prevent iron overload from happening to the rest of our family. They're going to be diagnosed early as opposed to waiting until they’re in their 40’s and 50’s, or not finding out until it's too late, or never finding out and dying of some unknown cause like many of our ancestors did. Armed with our new knowledge about hemochromatosis, we hope to shine a light on this silent killer for future generations.”

CDC would like to thank Dr. Shaun Carpenter and the Iron Disorders Institute for sharing this personal story.
The full story can be viewed on the DVD, “Iron Men: Living with Hemochromatosis.”

If you would like to share your personal story, please contact us at Contact CDC-INFO

 

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