In the world of Myelodysplastic Syndromes, anemia is often talked about as one of the most common symptoms patients deal with. However, we don’t often talk about how having anemia long term affects patients and their quality of life.
Anemia is a big problem for MDS patients. Research shows 85% of patients are dealing with anemia at the time of their MDS diagnosis. In fact, a lot of patients are tested for, and diagnosed with, MDS after going to the doctor to be evaluated for symptoms related to anemia. For many patients with Low Risk MDS (LR-MDS), immediate intervention in the form of a bone marrow transplant or chemotherapy is not necessary. Treatment for LR-MDS focuses on managing low blood counts and their symptoms.
Research outlining the burden of transfusions on patients shows that 94% of LR-MDS patients receive red blood cell transfusions in order to manage and treat their anemia1. While blood transfusions are effective at reducing anemia and its symptoms, patients are left with the burden caused by their reliance on transfusions. Further research shows that 65% of patients receiving transfusions reported that they would rather receive a treatment that made them feel worse overall if it meant they wouldn’t need to rely on transfusions as heavily2. In an analysis looking at literature surrounding LR-MDS, researchers found that patients who were transfusion-independent had a 59% decreased risk of death when compared to patients who were transfusion dependent3.
With the high percentage of LR-MDS patients reliant on transfusions, and the fact that two thirds of MDS patients are LR-MDS, researchers are beginning to look for other ways to help this large group of patients manage their anemia.
Blood transfusions have been integral to helping patients sustain life for many years. Now, looking forward, we hope to see new treatment options emerge that both sustain life AND sustain quality of life. Here at HealthTree we are eager to see what MDS researchers and specialists are working on in this avenue and will report on results of clinical trials and research that comes out to help you better manage your MDS symptoms.
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1. Ramsey SD, McCune JS, Blough DK, et al. Patterns of blood product use among patients with myelodysplastic syndrome. Vox Sang. 2014;102(4):331-337. 2. Sekeres MA, Maciejewski JP, List AF, et al. Perceptions of disease state, treatment outcomes, and prognosis among patients with myelodysplastic syndromes: results from an internet-based survey. Oncologist. 2011;16(6):901-911. 3. Harnan S, Ren S, Gomersall T, et al. Association between transfusion status and overall survival in patients with myelodysplastic syndromes: a systematic literature review and meta-analysis. Acta Haematol. 2016;136(1):23-42.
about the author
Mary joined HealthTree as the HealthTree for MDS Commnity Manager in 2022. She is passionate about giving power to patients through knowledge and health education. In her spare time, Mary loves attending concerts, spoiling her nieces and nephews, and experimenting in the kitchen.