Share Your MDS Story
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Kandy's Story
Patient
i was sent to a hemotologist after a routine cbc test from my primary care doctor back in 2015 because my platelets were iver 600. i was placed on hydroxyurea and took it for 7 years with different dosages as my platelets went up and down. finally in 2023 i had a bone marrow aspiration and was ultimately diagnosed with MDS, apparently due to the hydroxyurea. platelets remain close to 2 million and red and white cells remain within range but i flip flop with anemia. i only recently got access to my records and read that in 2024 my dr noted a 6 year life expectancy. thats scary and why i joined this group.
Read More MDS Stories
Discover genuine accounts from individuals navigating MDS. These stories reflect the real challenges and strengths within our community.
Joana's Story
Patient
I was diagnosed in October of 2022, a year after I fainted at my son’s soccer game, creating some sideline drama. It was “out of the blue.” Doctors ran all the expected neurological and cardiac tests,…
Mary's Story
Patient
In 2021 my internist, who I have been seeing for 15 years, suggested that I see a hematologist because he was concerned about my low RBCs. He referred me to Dr Raphael at NYU Perlmutter. At the time I…
Sarah's Story
Patient
I was diagnosed with MDS ring sideroblasts in 2018. I was on Procrit for two
years and then Luspatercept for two years. my hemoglobin dropped to 7.8
and had my first transfusion on August 1, 2025. I wi…
Share Your MDS Story
Your story matters. If you'd like to contribute your experience with MDS and inspire others in our community, we invite you to share. Your voice can make a meaningful impact and offer support to those on a similar journey.
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