This is interesting. I've never heard of someone with MDS developing PNH. Would it be primary or secondary PNH? They are not all the same. Secondary PNH is much milder, I believe.
Often times aplastic anemics have small PNH clones, and so they are at risk of developing secondary PNH. My mother has a small PNH clone, by the way, but she has classic aplastic anemia. When I asked my mother's hematologist about it, she said that having a small PNH clone means that her aplastic anemia is strongly immune-mediated, first and foremost. She wasn't that concerned about my mother getting secondary PNH, although possible.
@Andy: I'm wishing you all the best.
Love and peace,
Matthew
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