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Both Parents have Died of MDS- Cause for Concern?

Home Demo forums Patient Message Board Both Parents have Died of MDS- Cause for Concern?

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  • #54890
    Hillary Dunigan
    Participant

    Hello,

    Both of my parents were diagnosed with MDS. My mom in 2017 and my dad in 2019. My mom’s turned into AML after 9 months and she died one month after her AML diagnosis. My dad died two years after his MDS diagnosis, but died of Guillian Barre Syndrome.
    My question, how concerned should I be with my risk of developing MDS when I have lost two parents to it in such a short time? I am only 34. Is there anything I can do or should do, such a genetic testing?

    #54891
    Sue
    Participant

    Hi Hillary,
    First, I’m sorry to hear that both your parents have passed. That’s tough. Gentle hugs. ❤️

    It has been explained to me that (and I’m not sure there is a definitive answer) MDS is familial meaning it runs in families but it’s not inherited. Maybe others here will offer better info.

    In my case, my grandmother died of multiple myeloma, my dad from bone cancer, I have a cousin who survived AML and then there is me with MDS.
    BUT I also read that with the all the breakthroughs in genetics some are leaning towards their being a genetic link. (See article below in link)

    I would talk with your primary care physician about your concerns and maybe they can steer you in the right direction.
    Sue

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4926372/

    #54893
    Heinz
    Participant

    Hi Hillary,

    I was diagnosed with AML with a germline DDX41 mutation at my last bone marrow aspiration.
    More about it here:
    https://onlinelibrary.wiley.com/doi/10.1002/ajh.25486

    I hope this information helps you?
    Heinz

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