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Welcome to the MDS Patient Message Board. We hope that you will find this to be a very valuable resource in your journey. We have recently revised the format of our forum to be much more user friendly and pleasing on the eyes. Let us know if you have any problems, or if you have additional suggestions on how we might further improve our site.

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  • in reply to: My Mom at 97 may stop her transfusions for MDS #58679

    Dear Marc,
    If your Mom is lucid then it should be her decision and respected. If not, then perhaps a meeting with your siblings, mom’s doctors, if you have a belief in God, then also with your spiritual father.

    My best to you and yours,

    in reply to: Covid/Omicron Infection with MDS #58352

    Hello all,

    I’m 72 with DX of MDS-RS-SLD. I’m low risk, no treatment, blood draws and oncologist visits. I very concerned so I mask, still use wipes at gas pumps, hand washing and sanitizing. Maybe over protective? I have iron overload and macrocytic anemia. I suffer from breathing and fatigue. Ugh!

    I have 4 Pfizer shots, flu shots, shingles shots. I DO NOT want any infection, no colds, flu, bronchitis, COVID, etc. I do go for lunches. My friends respect my choices. I live with family. So far, so good. It’s just a change of lifestyle, but if it means staying safe, I do it willingly.

    in reply to: covid vaccine and MDS #57002


    Thank you for contacting CDC. I’m sorry to hear that you have been diagnosed with Myelodysplastic Syndrome.

    At this time, data does not indicate a causal association between COVID-19 vaccines and Myelodysplastic Syndrome.

    To address your questions further, we searched data from the Vaccine Adverse Event Reporting System (VAERS). VAERS is a national vaccine safety monitoring system managed by CDC and the Food and Drug Administration (FDA). VAERS accepts reports of possible side effects (also called “adverse events”) following vaccination. The system is not designed to determine whether a reported adverse event was caused by the vaccine, but serves as an early warning system and helps CDC and FDA identify areas for further study.

    As of December 7, 2021, VAERS has received 688,565 reports for all adverse events for the COVID-19 vaccine. Of those 21 (0.003%) are reports of Myelodysplastic Syndromes after receiving the COVID-19 Pfizer vaccine. Three of the 21 patients had a prior history of myelodysplastic syndrome.

    As of December 7, 2021, more than 473 million doses of COVID-19 vaccines have been administered in the United States.

    in reply to: covid vaccine and MDS #56912

    I got my Pfizer booster on 8/24/2021. Regular blood draw on 9/20 showed nucleated RBC at 114. Was referred to hematologist. DX is MDS. I see doctor this Wednesday to go over gene testing, pathology report and DNA. Can’t help to wonder if there is a correlation.

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