MDS is a bone marrow failure disorder

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Hereditary Hemochromatosis with MDS

HomeForumsPatient Message BoardHereditary Hemochromatosis with MDS

This topic contains 1 reply, has 2 voices, and was last updated by  kathleen 2 months ago.

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  • #33583

    Charlie Morriss
    Participant

    I’m hoping to contact and collaborate with other patients who have hereditary hemochromatosis and MDS.

    Hereditary hemochromatosis (HH) differs from the kind of hemochromatosis one might acquire from blood transfusions. HH is a congenital, genetic disorder in which the the body, from birth, stores much more iron than it needs and deposits that iron into vital organs. The effects of this genetic trait do not usually appear until the fourth or fifth decade of life when the consequences of genetically programmed iron storage begin to damage the liver, heart, pancreas, and many other organs. A simple DNA test confirms that symptoms are consistent with HH. Treatment consists of therapeutic phlebotomy to remove stored iron.

    Some MDS patients are diagnosed with ringed sideroblasts (RS). These are incorrectly formed blood cells that contain granules of iron and they cannot be properly utilized by the body. There have been a few studies that have attempted to discern whether there might be a correlation between patients who are diagnosed with HH and and who are also diagnosed with MDS plus RS. The results have been inconclusive, but interesting.

    I was diagnosed with HH two years ago. As I began therapeutic phlebotomy, my hemoglobin began to fall and other blood counts moved out of normal range in a manner that was inconsistent with HH. After a recent bone marrow biopsy I was diagnosed with MDS/MPN-RS-T, which is also sometimes referred to as RARS-t.

    HH with MDS is a rare combination, and I thought it would be helpful for like-minded patients who’ve been diagnosed with both of these disorders to stay in touch with each other.

    If you’ve been diagnosed with both HH and MDS, I’d be grateful to hear from you. Please reply.

    #33661

    kathleen
    Participant

    Charlie, my husband has HH and was diagnosed with MDS in July 2007. Vidaza was the most successful treatment for the past 8 years and he was taking Jadenu for the HH. He transitioned to AML in June, just finished induction, 40 days inpatient, and now loking forward to bone marrow or stem cell transplant. During chemo he was off the Jadenu and his iron levels have not been elevated since. He never had therapeutic phlebotomy. He is 70 and otherwise in good health.

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