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Information for Families

Photo: Collage of people young and old

If you find out that you have hemochromatosis, encourage your immediate family members to be tested for the amount of iron in their blood. Hemochromatosis runs in families. So, your blood relatives — your parents, grandparents, sisters, brothers, or children — may also have it. The sooner they know whether they have hemochromatosis, the better. People who start treatment early can stay healthy.

  • If you have hemochromatosis, your brothers and sisters have a 1 in 4 chance (25%) of having two HFE gene mutations.
  • If you have hemochromatosis, your children have about a 1 in 20 chance (5%) of having two HFE gene mutations.

It is important to remember that not all people with two HFE gene mutations will develop hemochromatosis.

In people with a family history of hemochromatosis, genetic testing can determine who in the family does not have the HFE gene mutation. However, measuring the amount of iron in the blood is more helpful than genetic testing for detecting iron buildup and hemochromatosis.

"I have iron overload, so I had my son tested to see if he has it too. I'm glad I did because he does have the disease, and we found out early. The doctor says if my son watches what he eats and gets phlebotomies when he needs them, he'll probably never suffer any bad effects."
- Carol S.