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Familial MDS… Hereditary?

Home forums Patient Message Board Familial MDS… Hereditary?

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    Pam Grillo

    I watched the webinar on Familial MDS on this website and wonder if anyone here has MDS that seems likely to have been inherited from a parent? If so what age did your parent get diagnosed in comparison to your diagnosis? We had been told it wasn’t hereditary but this webinar seems to contradict that information which is disheartening. Curious to know.

    Site Admin

    Thank you for posting Pam. For those who missed out or would like to revisit this webinar, please view it here


    If you type “familial MDS” in the search box on this webpage (no quotes needed), you will see a few past postings of people questioning the hereditary aspect and giving their examples about a possible inheritance in their family chain. Because of the very small numbers of occurrences, I personally don’t completely understand how experts can definitively rule out the difference between inherited MDS solely from the family gene as opposed to getting MDS from exposure to the same environmental toxin or other cause.
    I was diagnosed in 2004 at age 34 with 5q- MDS. No one in my family on either side had a bone marrow disorder. I asked my (brilliant) MDS doctor back then if I would pass it along to my children when I had kids. I was told no, I wouldn’t pass it along if I had children. I now have twin 12 year old girls who are extremely healthy and show no signs of MDS. I thank God for them every day.
    Take care,

    Chelsea Clark

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