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Phone within the US
1-(800)-637-0839Outside the US only
1-609-298-1035Address
The MDS Foundation
228 Park Ave S
PMB 118983
New York
NY 10003-1502
The MDS Foundation is a global nonprofit 501(c)(3) advocacy organization (EIN 22-3283911), supporting patients, families, and healthcare providers in the fields of MDS and related diseases for over 30 years.
© 2024 MDS Foundation. All rights reserved.
One Voice Inspires, Many Voices Transform
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.
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.
Discover genuine accounts from individuals navigating MDS. These stories reflect the real challenges and strengths within our community.
Patient
I am newly diagnosed with MDS. My platelet count has been low since March of this year. I had a bone marrow biopsy which indicated scarring of the marrow. I am a double lung transplant. My 8th lungave…

Patient
ive been diagnosed with MDS, 2019, and have 5q deletion, had breast cancer 16 years ago.
was on Revlimid for 5 years but it recently stopped working, was great for the 5 years...then hemoglobin startie…
Professional
I am a nurse practitioner and researcher. For 32 years, I have worked as an oncology nurse practitioner, focused on the care of patients with cancers involving the bone marrow. As a student nurse, I t…