Myelodysplastic Syndromes (MDS)

Myelodysplastic syndromes are a group of diseases where a person’s bone marrow fails to produce enough healthy blood cells, and instead produces immature blood cells called blasts.

Easy bruising or bleeding

Frequent infections

Pinhead-sized red spots on the skin (petechiae)

Fatigue

Paleness of skin

Shortness of breath

There are two main categories of MDS: lower-risk and higher-risk. The type of MDS an individual has is defined by the number of blasts that are in their bone marrow, which determines the severity. Blasts refer to abnormal immature white blood cells, and people with MDS have too many blasts in their bone marrow.  

Lower-Risk MDS
  • Lower-risk MDS is defined as having less than 5 blasts out of 100 white blood cells in the bone marrow.
Higher-Risk MDS
  • Higher-risk MDS is defined as having between 5 and 19 blasts out of 100 white blood cells in the bone marrow.

An individual is diagnosed with acute myelogenous leukemia (AML) when there are 20 or more blasts per 100 white blood cells in the bone marrow.

The following tests can be used to confirm a diagnosis of MDS: 

  • Blood Tests: Blood tests can indicate the levels of red blood cells, white blood cells, and platelets in a person’s blood.
  • Biopsy of Bone Marrow: A bone marrow biopsy is when a small piece of bone marrow is removed from the body so it can be further examined for diagnosis.
  • Chromosome Tests: Chromosome abnormalities are common in MDS patients, therefore evidence of this can be an indicator of the condition.

Treatment and management options for MDS include:

  • Blood Transfusions: Regular blood transfusions help provide the patient with a healthy amount of blood cells from donors to relieve symptoms of anemia.
  • Stem Cell/Bone Marrow Transplants: A bone marrow transplant gives patients healthy stem cells to replace the diseased bone marrow.
  • Chemotherapy: Chemotherapy can help reduce the abnormal stem cells and allow healthy stem cells to grow back. MDS can progress to acute leukemia, so MDS patients may be treated with chemotherapy as that is a common treatment option for leukemia.
  • Growth Factor Injections: Chemotherapy can help reduce the abnormal stem cells and allow healthy stem cells to grow back. MDS can progress to acute leukemia, so MDS patients may be treated with chemotherapy as that is a common treatment option for leukemia.
  • Medications: Medications for MDS can help stimulate blood cells to mature, control immune system, and treat infections.

Ongoing Research

MDS is a rare disease that requires more effective treatment options. To find these new treatments for MDS, further research is necessary.

Current Research Studies

Discover our featured study below. If the BEXMAB study is not right for you, there are approximately 360 MDS research studies that are actively recruiting participants. Visit ClinicalTrials.gov o find MDS research studies near you.

Featured Study

BEXMAB Higher-Risk MDS Study

You may be eligible to participate in a study evaluating a new drug for individuals with higher-risk MDS, which aims to enhance the effectiveness of standard chemotherapy treatment.

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Resources

Find an online community of fellow patients, caregivers, and advocates below
as well as some other general resources!

Living with Myelodysplastic Syndromes
A group focused on living with MDS, sharing materials, and asking and answering questions about MDS.
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Myelodysplastic Syndrome Support Group
A group focused on helping MDS patients find support and educating themselves on their condition.
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Reddit Group: r/MDS
A subreddit community for news, discussion, and information related to MDS.
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MDS Foundation
A global non-profit advocacy organization that has supported patients, their families, and healthcare providers in the fields of MDS and its related diseases for over 25 years.
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MDS Alliance
An international organization that aims to ensure MDS patients have access to the best care. They aim to provide patients, healthcare teams and member organizations with resources and the latest information about MDS.
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The Aplastic Anemia & MDS International Foundation
A non-profit organization whose mission is to support patients and families living with aplastic anemia, myelodysplastic syndrome, paroxysmal nocturnal hemoglobinuria (PNH), and related bone marrow failure diseases.
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The Leukemia & Lymphoma Society
A non-profit organization committed to finding a cure for various blood cancers and improving the quality of life for patients and their families.
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HealthTree Foundation for Myelodysplastic Syndromes
This organization aims to assist patients in understanding their disease and navigating it more effectively. HealthTree Foundation supports various diseases including acute myeloid leukemia, chronic lymphocytic leukemia, kidney disease, multiple myeloma, and myelodysplastic syndromes.
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LLS Clinical Trial Support Center
This center helps connect people with clinical studies and trial sites. Patients will be connected with a LLS Clinical Trial Nurse Navigator who will provide assistance through the clinical trial process.
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Podcasts for Patients
The "Podcasts for Patients" is a resource created by the Aplastic Anemia and MDS International Foundation for patients, caregivers, and families who want to learn more about rare blood cancers and bone marrow failure diseases.
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MDS Professional Report
This podcast, created by the MDS Foundation, provides information on MDS, including updates on diagnosis, treatments, and clinical research.
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Myelodysplastic Syndromes and Disability Benefits
Visit the resource below with information about disability benefits for people with myelodysplastic syndrome.
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New Treatment Approved for Certain Patients Living With Myelodysplastic Syndromes
Visit this article to learn how the FDA has approved imetelstat (known commercially as RYTELO) for the treatment of MDS in certain individuals.
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Transforming the Treatment Landscape for AML and MDS With myeloMATCH
Read this article to learn more about the myeloMATCH trial that is aiming to improve outcomes for those with acute myeloid leukemia (AML) and myelodysplastic syndromes (MDS).
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