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Hereditary Hemochromatosis with MDS

HomeForumsPatient Message BoardHereditary Hemochromatosis with MDS

This topic contains 2 replies, has 3 voices, and was last updated by  hollyhocks 2 months, 2 weeks 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.

    #34497

    hollyhocks
    Participant

    Hi Charlie! I also have Hereditary Haemochromatosis(HH) with MDS RARS so was very interested to read your post when researching the topic on line. I am 71, I live in the UK and was diagnosed with HH in 2004. Weekly venesection for 18 months reduced my serum ferretin levels to the recommended 20-50 ug/L During this time my blood counts were low & my Haematologist recommended a bone marrow biopsy, I decided not to go ahead with it as my husband had just been diagnosed with prostate cancer & I thought I had enough on my plate at the time. My husbands surgery went well and he made a good recovery & my serum ferretin remained stable with intermittent venesection. In 2010 we moved to a new area so had a change of Hospital & doctor, a routine blood test showed that my blood count was low and a bone marrow biopsy showed that I had MDS RARS. I was the first patient that the hospital had had with the two conditions, the haematologists thought it was too ‘risky’ for me to have venesection so my serum ferretin was allowed to rise & I became very unwell with iron overload & developed Porphyria Cutanea Tarda as a result. I was eventually referred to Kings College Hospital in London, a centre of excellence for MDS, I was given high doses of Deferoxin (chelation therapy) and venesection to reduce my iron load, I developed Acute Kidney Injury (AKI) & Acute Hepatitis & was hospitalised for some time. I had remained iron deplete for the past 18 months & have not required venesection during that time, my blood counts have been reasonable & have not needed transfusing. I have had a couple of infections needing antibiotics this year and I am experiencing frequent & prolonged episodes of fatigue. My last serum Ferretin was above 50 so will need venesection before too long. The medical team are not quite sure how they are going to manage my condition long term as non of the current treatments or even drug trials seem suitable, I am just told ‘it is complicated’!! I did read something on the internet that suggested that the combination on Hereditary Haemochromatosis & MDS RARS did afford some protection so I am hoping that is the case. I belong to the UK MDS Support Group & as yet have not had contact with anyone else with HH & MDS RARS. I would be really interested to hear about your experience, treatment etc Charlie. Thank you so much for reading this if you managed to get to the end! Best wishes Heather

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