Mary Jane
I'm so sorry to hear that your son has been diagnosed with this hereditary disease. All of your blood relatives should be tested. His parents first, then work from there. He may want to have the genetic test done to see what genes are involved. There are 3 defective genes possible,some people have only 1 others 2-3. The gene test can be done on your own if you would like to keep this info out of your medical records. The University of Michigan offers a test through the mail that is easy to do. You can contact them at www.phd.msu.edu. for information.They were very resposive to my inquiry. The results will be sent only to you if there is only one defect. If there are 2-3, they have to let your doctor know so that you can be treated properly. You can discuss this with your M.D. and possibly keep it out of your records, since you paid out of pocket for the test. Some insurance companies may pay for the test, but they might hold the results against you for future insurability. The important thing is that you find out how this came through your family and who is at risk. Iron saturation,Total iron binding capacity and ferritin levels need to be checked. Men tend to develop it earlier than women because we lose blood every month. However if a child has the gene from 2 parents(this is the most common genetic defect known) they can develop symptoms very early. This condition is very common in the Celtic races. There is also an acquired form of hemochromatosis that one can get from excess iron in the diet. The internet has a lot of info for you. The American Hemochromatosis Society's Sandra Thomas at e-mail ahs@emi.net can send you more info. Center for Disease Control can give you information. The good news is you can help others in your family avoid complications by early detection. Good luck and take care. M.J.