[ Post a Response | Hemochromatosis ]
Posted by Elizabeth M on 12/30/2005, 11:11 am, in reply to "Re: 20 yr old son diagnosed after 9 months of testing" Kathy is correct in that CBS does accept blood from hemochromatosis patients who otherwise meet all their rather stringent criteria. The 56 day interval is what prevents a person in the acute de-ironing phase from donating through the CBS. In some jurisdictions in the US, blood banks can apply to have this 56 day restriction waived, however, our efforts to have the CBS seek this approval from Health Canada have been unsuccessful to date so this blood is currently discarded. Just a note about Kathy's comment about iron rich blood. All blood, even that of HHC sufferers, has virtually the same amount of iron - approx. 225 -250 mg/unit of blood. The excess iron for HHC sufferers is NOT in the blood, but in storage. The ferritin reading is only a reflection of the iron in storage in the body where it is causing the problems and the iron bound in ferritin in the blood is not available. It is the iron in the hemoblobin that is the key. When the body makes new red blood cells, it pulls iron from storage to do it, hence the effectiveness of the treatment for hemochromatosis - the removal of blood. Hemochromatosis is a iron metabolism disorder NOT a blood disorder, which is why CBS will accept the blood. A note about alochol consumption. The key really is the state of the liver. If there is ANY permanent liver damage, a complete avoidance of alcohol is recommended. Certainly moderation is stressed for all people with HHC because of the stress on the liver. Fortunately for your son, he has been diagnosed early, hopefully before permanent damage has been done. Good work on your part in persevering to get the diagnosis for him and in following up with your other children. You and the father of your children might also want to be tested, as you would both be carriers. Some carriers also end up loading iron, probably because they have other mutations that work in combination with the HHC gene. Regards, Elizabeth Minish
207.23.94.173
Hi Marj,
President,
Canadian Hemochromatosis Society
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