Share Your MDS Story

One Voice Inspires, Many Voices Transform

Virginia Sue's Story

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 startied droppong and has been since around September of 2024...

im now on Luspatercept and have been having to have blood transfusions, never had with Revlimid...only my third infusion of Luspatercept so im praying it will kick in and help me become the happy, energetic 75 year old possible...prior I was full of energy and felt balanced. Now, ive had horrible bouts of low BPressure, then spikes of high before normalizing...very frightening and exhausting.

more info available as needed. thank you and GOD bless us all!

John's Story

Patient

In late 2020, my primary care doctor noticed that my platelet counts were a little under normal. At a following check-up, they decreased again. He sent be to a hematologist-oncologist who sent me for …

James' Story

Patient

James Williams

MDS Survivor, MDS Foundation Board of Directors, Development Advisory Board & Finance Committee Member

My journey with myelodysplastic syndromes (MDS) began in early 2017 with unexplained…

Janice's Story

Patient

I was sent to a hemotologist because of routine blood tests showing low WBC and low platelets. Since then I have had a bone marrow biopsy and diagnosed with low risk MDS, bilineage cyopenia and blast…