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Donating Blood: Hereditary Hemochromatosis

Q What is Hereditary Hemochromatosis?

Hemochromatosis (HH) is a hereditary disease, not an infection. Individuals with HH absorb too much iron from their diet, which can result in toxic levels of iron in tissues of major organs. If left untreated, the abnormal absorption leads to high levels of iron in the body, which can cause heart and liver disease, diabetes, arthritis, and other problems.

There are many symptoms, the most common of which include chronic fatigue, arthritic pain in joints, loss of libido or impotence, abdominal pain, and shortness of breath.

People at risk include males of northern European descent, those with a family history of premature death by heart attack, liver disease, diabetes, and arthritis, and post-menopausal women with the same ancestry and family history listed above.

It is estimated that 1 in 200 people either has the disease or is a carrier for it.

The most effective way to decrease the amount of iron in the body is to remove red blood cells that naturally contain large amounts of iron. People with HH often need regular phlebotomies to remove the excess iron.

Q What happens to the blood drawn?

In the past, the blood was collected and destroyed. Because of a change in guidelines by the Food and Drug Administration, the Adventist Lab Partners (ALPS) Blood Center may now test and process these donations and, in many cases, use the blood for transfusion to patients in need.

As long as the patient meets state and federal guidelines for blood donors, the blood will be made available for other patients in need. If the patient does not meet the requirements, the blood is destroyed in order to maintain a safe blood supply.

Q What are the costs?

Because the blood may be transfused to other patients, there is no charge to the HH patient for the phlebotomy regardless of whether or not the blood is used. However, the patient will be billed for any additional testing ordered by their physician.

Q Is it safe?

A person receiving a transfusion of blood from a patient with HH cannot contract HH. HH is a genetic disorder and not contagious. There is no danger of contracting any disease from giving a blood donation. All materials, including the needles are sterile, used once and safely destroyed.

Q When will this program begin?

Blood drawn from HH patients will begin to be used by the ALPS Blood Center for other patients beginning August 30, 2004. All potential participants will need a doctor's order for the phlebotomy as well as confirmation of your diagnosis.

Q Why is this so important?

It is the rare instance when a treatment for one disease will save the life of someone with another disease. These patients have "too much of a good thing." Now that good thing - safe blood - can be shared with other patients in need.

The ALPS Blood Center, located at Adventist Hinsdale Hospital, is one of 57 centers across the country, one of 2 in Illinois, and the only blood center in the Chicago area regulated to collect blood from HH patients for donation.

Q What should I do to participate in the program?

Call our hotline for more information at 630-856-2566.

Or talk to your physician about making a therapeutic phlebotomy appointment with the ALPS Blood Center. For more information have your physician contact the Blood Center at 630-856-7804 or Marisa Saint Martin, MD.

We have more information on Hemochromatosis listed under our Diseases, Conditions, and Injuries section...

More Sources for Hemochromatosis Information

American Hemochromatosis Society
Centers for Disease Control and Prevention
National Institutes of Health
Iron Disorders Institute