Hereditary hemochromatosis (hee-muh-kro-muh-TOE-sus) is a disease that causes the body to absorb and store more iron than it should. The iron comes from the foods we eat.
With hemochromatosis, iron builds up slowly in the joints and organs such as the liver, heart, brain, pancreas, and lungs. This can cause liver disease, diabetes, heart disease, joint pain, fatigue (extreme tiredness), and other problems as a child grows up. When doctors diagnose hemochromatosis early, these problems can be avoided.
Kids don't usually show signs of having hereditary hemochromatosis. That's because it can take many years for excess iron to build up in the body and cause symptoms.
Hereditary hemochromatosis is a genetic condition. For kids to get it, both of their parents must have the gene that causes the condition. But many kids who inherit the gene from their parents do not develop any problems. They may absorb and store extra iron, but not enough to cause health problems.
To diagnose hereditary hemochromatosis, a doctor may recommend:
It is very rare for a child to need treatment for hereditary hemochromatosis. If it is treated, a doctor may recommend phlebotomy (flih-BOT-uh-mee). This is a process to remove some blood from the body on a regular basis to lower iron levels.
To remove the blood, a phlebotomist inserts a needle into a vein in the arm. It's the same process as when someone donates blood. The amount of blood removed, and how long this takes, depends on the patient.
If your child has been diagnosed with hereditary hemochromatosis, you can help slow iron buildup by:
Make sure your child is vaccinated against hepatitis A and hepatitis B. These diseases can damage the liver. A damaged liver might not be able to manage iron well. This can lead to excess iron in the liver, causing more liver damage.
Kids and teens should not drink alcohol — but sometimes they do. If your child or teen has hereditary hemochromatosis, they need to know that drinking alcohol is harmful. Alcohol makes the disease worse, and can put people who have it at risk for liver disease.
Reviewed by: Robin E. Miller, MD
Date Reviewed: Jun 12, 2019