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Hemochromatosis: Online Training

Hemochromatosis (called iron storage disease) occurs when the body absorbs too much iron from foods and other sources such as vitamins containing iron. This disease causes extra iron to gradually build up in the body's tissues and organs, a term called iron overload. If this iron buildup is not treated, it can, over many years, damage the body's organs.

Dr. Shaun Carpenter's Story

Photo: Dr. Shaun Carpenter

Dr. 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.

Photo: DVD cover of 'Iron Men: Living with Hemochromatosis, Discover the Strongest Family Bond of All'

The full story can be viewed on the DVD,"Iron Men: Living with Hemochromatosis."

"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 Institutefor sharing this personal story. 

The full story can be viewed on the DVD, "Iron Men: Living with Hemochromatosis."

Online Training for Healthcare Providers

This online training course was developed by the CDC, in collaboration with hemochromatosis experts throughout the United States. The purpose of the course is to promote early detection and early intervention of adult onset hemochromatosis. The course includes information on epidemiology, diagnosis, treatment, and management of patients with iron overload and hemochromatosis.

The training uses case studies and consists of eight modules. Training module topics:

  • Pathophysiology
  • Epidemiology
  • Clinical Features
  • Diagnostic Testing
  • Treatment and Management
  • Family-based Detection
  • Course Summary
  • Case Studies

To access this course, please visit the Hemochromatosis Training and Education page.

CDC's Work

By learning more about hemochromatosis and its implications, CDC can plan public health programs that will increase awareness of this blood disorder and result in earlier detection and diagnosis. Early detection and treatment of hemochromatosis offers one of the best strategies for preventing complications.

Hemochromatosis and Public Health 
In September 2009, CDC convened a scientific meeting on hemochromatosis and invited experts worldwide from the fields of medicine, epidemiology, genetics, and molecular biology. Recent clinical and scientific information was shared to help discuss the role of public health.

This meeting was convened to discuss directions for future public health priorities. These priorities include:

  • Improved clinical management of people who have hemochromatosis
  • Epidemiologic activities, with a special emphasis on laboratory issues and genetic research
  • Enhanced partnerships between CDC, state and local health departments, health care providers, and community patient groups to promote education on hemochromatosis

Understanding Diagnosis and Treatment of Hemochromatosis 
The diagnosis of hemochromatosis is made difficult by the lack of characteristic clinical symptoms and a specific laboratory test. To learn more, CDC has funded the Medical University of South Carolina to survey more than 5,000 adults who have been diagnosed with hemochromatosis.

The primary study objectives are:

  • To characterize the circumstances surrounding and resulting in hemochromatosis diagnosis, including presenting symptoms, laboratory tests, family history, and other factors
  • To assess the treatment and response to treatment of patients after the diagnosis of hemochromatosis was made

The goal of this study is to improve the understanding of diagnosis so that patients are recognized and appropriately treated. CDC will also use these survey results in developing patient and physician education.

 

More Information

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  • Page last reviewed: July 2, 2012
  • Page last updated: July 2, 2012
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