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DDX41 mutation on BMB ??

Home Demo forums Patient Message Board DDX41 mutation on BMB ??

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    judithtjr
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    So I’m still trying to figure out what this means for me. I guess i havent wanted to ask many questions until now. Im six months post BMB which showed the DDX41 mutation we have been trying to get insurance to cover the germline test to clarify the type which i finally got done so now i should have results in the next six weeks. But we did find out my 19 yo sons WBC’s were 3 but that was just a one time check he is getting them repeated this next week so see if they are still low. But this did make me think it is germline also because mine have been in the 2’s since my 20’s. I am now 45 and went to hematology for iron infusions for my HGB of 9-10 and he was like how has no one ever worked this up before so we did the BMB last June blasts were less then one so I’m good there and have only the low WBC’s and anemia for as long as i can remember. I have four other children and none of them have low WBC’s and four sisters and 14 children between them and none of them and also my parents are still alive and theirs are fine also so im really not sure. Very stressful waiting for this germline test. But now the more I read it doesnt matter if it is germline you can still have the severe form of MDS. I dont feel like the Dr I have right now has much experience with this form of the MDS from the DDX41 mutation or maybe I’m just not understanding. So I guess what I’m wondering is if anyone has this diagnosis of germline DDX41 mutation and do you have MDS from it? What have you heard of being the prognosis if it is the germline form because he seems to give me the impression it is no big deal at all if it is the germline form but from what i read it can and is a big deal and i just cant find anything that gives me any kind of consistent prognosis of what this means. I mean i can understand having the gene mutation and not having issues from it if all my numbers were good and normal but they arent normal my white count is 2 ANC 0.7 and that was six days into COVID infection so that cant be normal. Im sorry i guess im venting I get labs done again in the morning and see my HEMONC Dr on monday and i will have a list of questions to ask him i guess im ready to hear the truth I’ve not wanted to accept thank you and any links or places to get the answers im looking for would really be great.

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