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Iron Overload or Hemochromatosis

Mary Lynne Webb

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I am 58 years old and after almost a year of being tested for various things (and beginning to wonder if I was just crazy) I was diagnosed with hereditary hemochromatosis. On DNA I have two of the genes, it only takes one, so you (daughtr) should be testd. I am very fortunate in that a doctor at the Oklahoama Univrsity Health Sciences Center in Oklahoma City is recognized as one of the world authorities in this disease. She has studied it since the '50's. Her name is Dr. Sylvia Bottomley. I highly recommend her -- I don't know how much you know about the disease, but it as many manifestations which makes it so difficult to diagnose -- it primarily affects major organs and eventually just shuts them down. They say it is the most misdiagnosed and one of the most common hereditary diseases among Western Europeans. There is also an iron overload disease association which sends out information -- I do not have their address readily available at the moment. Fatigue and loss of muscle strength/joint pain are the major affects I have had, although I did have heart atrilfribulaton (sp?) two years ago and now they believe that was the cause. The good news is that the cure is phlebotomy (I have had a pint of blood taken every 2 weeks or 10 days, for several months) to get the iron level down to where it should be. If phlebotomy is successful people often have to have a pint taken once a month or as little as only every three months to keep it at bay. Dr. Bottomley could surely point you to a doctor in Ohio for treatment, or you could contact the Mayo Clinic or the Hemochromatosis Society.

 


   
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