Family Member Detection/Get Tested Letter

Dear Family Member,

One of our family members is under medical care for hemochromatosis (pronounced he-mo-kro-ma-TOE-sis), a deadly, but treatable genetic condition that causes the body to absorb too much iron. Because you are a family member related by birth (blood relation), you may have inherited the genes that can cause this disease.


During the early stages of hemochromatosis, most people do not feel sick and cannot tell they have the disease. Without treatment, however, iron can build up in the heart, joints, or pancreas and cause permanent damage. the resulting illnesses include liver and heart failure, cirrhosis, six different cancers, arthritis, heart attack, diabetes and Alzheimers. The good news is that complications from hemochromatosis can be prevented if it is found and treated early. The bad news, 75 percent are asymptomatic, the current awareness of the disease and diagnosis rate are low, and simple blood tests that would catch it are no longer routine/standard. The disease is often misdiagnosed and treated only when end stage illnesses occur. This is why family members should get tested.(not only brothers, sisters, parents, but cousins, nephews, nieces, any blood relation to the HH patient.

To find out if you have this condition, have your iron status evaluated by your family doctor as soon as possible.


Two simple blood tests can determine if you have too much iron in your blood: transferrin saturation and serum ferritin. If test results show that you have too much iron, ask to have a simple genetic test run to determine definitively that you carry the nutated genes. If you are loading iron you will need to begin phlebotomy [pronounced flee-BOT-o-me] treatment. This is a safe, simple, and very effective treatment. On a regular basis, (once a week on average for 8-14 months) patients have blood taken from a vein in the arm, just like donating blood. Once iron levels are back in balance, patients are monitored and bled periodically when iron levels become elevated. With proper treatment, people with hemochromatosis lead long, healthy lives. The earlier it is diagnosed the better the long term outcomes.

Please do not ignore this letter. The special blood tests you need are very simple. Remember, many people who have hemochromatosis feel fine. Finding the disease EARLY is important. Be sure to ask your doctor for these blood tests and talk with your doctor about the results. If you are diagnosed as a carrier (one mutated gene) you are still at risk. If your iron levels are not elevated at the time of diagnosis, plan to have them tested twice a year. The medical community is currently being educated about the risks to carriers. Carriers load iron and the loading of iron is what causes the damage.



You can learn more about hemochromatosis from these websites: