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@ctkbear

Unfortunately, phlebotomy was not an option for my husband because he is anemic. He was diagnosed after suddenly becoming seriously sick and hospitalized. At that point, his liver was compromised and on the verge of failure. He was treated with Ex-jade for several months until his ferretin level became safe. He is now seen every four months by his hematologist and has remained stable for the past eighteen months. Our two sons were subsequently diagnosed and both are being treated with phlebotomy and doing well. Their counts are coming down much faster than their father’s did and both are doing well with with phlebotomy.

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Replies to "Unfortunately, phlebotomy was not an option for my husband because he is anemic. He was diagnosed..."

Yes, unfortunately anemia does prevent having blood removed on a regular basis so then a chelating agent/medication such as Exjade is used to remove iron from the body. It’s wonderful that he’s now stable and doing so well.
Hemochromatosis is most often genetic so both of your sons must have acquired the genes. Was this discovery through genetic testing or bloodwork for them?
Did you husband’s diagnosis prompt the testing of your sons?
I’m glad that they’re responding so well with the phlebotomy treatments. This has to be a huge relief for you and your husband.

Are any of them having to pay particular attention to any foods or supplements to not increase their iron?

Thank you for sharing your family’s experience with Hemochromatosis. It’s stories such as yours which can really help other members in our forum with similar issues.
Wishing them continued good health! You too! Lori

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