Early Detection is Key: Good Facts to Know During Hemochromatosis Awareness Month

July is hemochromatosis awareness month – and in its honor, below is some useful information that could provide helpful.

One thing to remember about Hemochromatosis is that early detection is key!

What is Hemochromatosis?

Hemochromatosis is a rare disease that causes excess iron to build up in the body. Even though the body needs iron to survive, the concentration of iron in hemochromatosis is toxic and stored in the body tissues, especially the liver, heart, and pancreas. Without treatment, the build-up of extra iron can cause organ failure.

There are two types of hemochromatosis: primary hemochromatosis (inherited) and secondary hemochromatosis (a complication from another condition, such as anemia or thalassemia).

Undiagnosed and untreated hemochromatosis (too much iron) increases the risk for diseases and conditions such as:

  • Diabetes mellitus
  • Irregular heart beat or heart attack
  • Arthritis (osteoarthritis, osteoporosis)
  • Cirrhosis of the liver or liver cancer
  • Gall bladder disease
  • Depression
  • Impotence
  • Infertility
  • Hypothyroidism
  • Hypogonadism
  • Some cancers

To learn more about hemochromatosis, click here.

Early Detection

Two blood tests can also be used to screen people who may have iron buildup due to hereditary hemochromatosis. These blood tests measure how much iron is in the body.

The U.S. Preventive Services Task Force recommends against routine genetic screening for hereditary hemochromatosis in the asymptomatic general population, but states that individuals with a family member, especially a sibling, who is known to have hereditary hemochromatosis should be counseled regarding genetic testing.

Knowing your family health history can help you and your doctor understand your risk for hemochromatosis. It is helpful to talk with your family members about their health history, write this information down, update it from time to time, and share it with your doctor. Family health history information can help your doctor determine which tests and screenings are recommended to help you know your health risk.

To learn more about family health history, click here. 

What Tests are Needed for Diagnosis?

There are 3 tests that together make up the Iron Panel Test. These tests look at serum ferritin, total iron binding capacity, and serum iron. These tests need to be taken as a panel, not independently, to receive a comprehensive and accurate assessment of a potential Hemochromatosis diagnosis.

To learn more about the Iron Panel Test, click here.

What resources exist for Hemochromatosis Patients?

Check out these resources that provide information, insight, and community.

  1. The American Hemochromatosis Society (AHS)
  2. Iron Disorders Institute
  3. Centers for Disease Control and Prevention (CDC)


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