Once again the Red Cross is coming to town for a blood drive and once again, I will be turned away unless I have a doctors order for therapeutic phlebotomy and $85 in hand.
I have hereditary hemochromatosis, a genetic iron overload disease. It is the most common genetic disease among people of northern European ancestry. We are missing an essential regulating mechanism that tell our bodies how much iron to absorb. When we have too much, it is deposited in our hearts, kidneys, livers and brains. This heavy metal causes many health problems and can be fatal if left untreated. Treatment is simple and can prevent all of the complications of the disease if it is diagnosed early.
Therapeutic phlebotomy is the removal of a pint of blood every week for up to several weeks until the bodies iron stores are reduced to an acceptable level. I fought my health care providers to get diagnosed because I was told that women don't get this disease; they were wrong.
I also was told it is a very rare disease, also wrong. I found a genetic study at the University of Washington and was selected to be a participant. My siblings also got tested; out of five, three of us have the disease. Until 1999, the United States was the only industrialized nation in the world that did not allow HH blood to be used as donor blood. The FDA changed their rule, allowing blood banks in the U.S. to apply for a variance that would let them use HH blood as donor blood.
Unfortunately the Red Cross hasn't followed suit, at least not in Alaska. They are still parroting the standard party line: Anyone who donates blood for other than altruistic reasons has a higher incidence of blood borne disease. When I get treated, I still have to pay them $85 a pop to take my lovely, iron-rich blood and throw it away. Doesn't make much sense, does it?
May is National Hereditary Hemochromatosis Genetic Screening month. If your heritage includes the top half of Europe and the UK, get tested. If you live in Alaska, call your local chapter of the Red Cross and tell them you want them to accept HH blood as donor blood. There would never be a shortage of whole blood again in this state and this country if the Red Cross would change their policy to reflect the rule change by the FDA.
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