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.
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One Voice Inspires, Many Voices Transform
Patient
Bruising was the first visual sign, and next was extreme fatigue. Just not feeling my normal self. Bone marrow test revealed MDS with 5Q minus syndrome. I turned 70 in February of this 2025, and diagnosed with MDS one month later. So far, we are keeping close tabs on my hemoglobin levels. I feel it waxs and wans because I will have good days and then bad days. So far, we are not doing any medication because hemoglobin level increased from 9.2 to 10.2 somehow I don’t know. Anyway, we are not doing anything at this point. My family doctor started me on Remeron because I was having difficulty sleeping, causing me to be irritable and more fatigued. The more I’m learning the more I know that it’s rare and not much as known. I’d be interested in learning more through the foundation and with other patients.
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Discover genuine accounts from individuals navigating MDS. These stories reflect the real challenges and strengths within our community.

Patient
Hello all, I’m gonna get down to the nitty-gritty first. Feb. 26, 2025 I was diagnosed with myelodysplastic syndrome MDS with SF3B1, SRSF2, CSF3R, and SETBP1 mutations identified. But unfortunately it…
Patient
recently dia
Patient
My experience with MDS started in January, 2023. I had gone for bloodwork, ordered by my rheumatologist. She called me late that night because she was worried about my #'s. I was booked to see a Hemat…