Share Your MDS Story

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Melissa's Story

Caregiver

My 83 year old father has been failing since May 2025. He has always had low anemia however in the past few weeks he was diagnosed with MDS. He is losing so much weight and is very fragile. He is getting a shot every other week to boost his red blood cells but it does not seem to be working. I am looking to see if there are other options or if we just need to be more patient to see results.

henny's Story

Patient

I was diagnosed in December, 2022. After getting a second opinion (from Dr. Greenberg at Stanford who ordered another bone marrow test), I started chemo (decitabine) in February 2023 and have been ge…

Ashley's Story

Professional

I fell into the MDS field by chance; I stayed with a purpose. I graduated from nursing school in 2012. The first job I could find was in a small, community hematologist/oncologist office. Although it …

Mike's Story

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…