Living with Myelodysplastic syndrome
A group of blood conditions in which bone marrow doesn't make healthy blood cells, causing low blood counts.
Understanding Myelodysplastic syndrome
People with MDS have low blood cell counts. In some people, MDS can progress to bone marrow failure or turn into acute leukemia. It happens when a cell with a genetic change copies itself and crowds out healthy stem cells in the bone marrow. It can come from a genetic predisposition or from DNA injury from chemotherapy or radiation. Often there's no obvious cause.
Signs & symptoms
Symptoms vary from person to person. GARD lists these:
- Dizziness
- Tiredness (fatigue) and weakness
- Shortness of breath
- Bruising and bleeding
- Frequent infections
- Headaches
Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.
Diagnosis
- 1Talk with your doctor
Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.
- 2See a specialist
Specialists who may be involved include blood and bone marrow specialists and cancer specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
Aplastic Anemia and MDS International Foundation and The MDS Foundation may keep lists of experts for this condition.
Care & treatment
- Care team
- Blood and bone marrow specialists (hematologists); Cancer specialists (oncologists)
- Expert care
- Expert lists: Aplastic Anemia and MDS International Foundation, The MDS Foundation
- Treatment
- GARD doesn't list specific treatments for this condition. Your care team will tailor care to your symptoms.
- Research
- Clinical trials and observational studies may be options. See the research section below.
General information, not medical advice. Your care team makes the decisions.
Everyday life
Living with a rare condition is easier with support.
- Connect with Aplastic Anemia and MDS International Foundation and other patient organizations
- Keep notes on symptoms, changes and questions for appointments
- Ask about patient registries that help research
- Look into financial aid and travel resources for care visits
Quick facts
MDS develops when a cell with a genetic change copies itself and crowds out healthy stem cells. The change may come from a predisposition or from DNA injury such as chemotherapy or radiation. In many people there's no obvious cause.
Also known as: dysmyelopoietic syndrome; hematopoeitic - myelodysplastic syndrome (mds); mds; mds - myelodysplastic syndrome; mds-u; mds, unclassifiable
Patient organizations
- Aplastic Anemia and MDS International FoundationMyelodysplastic syndrome · United States
- The MDS FoundationMyelodysplastic syndrome · United States
- American Cancer SocietyMyelodysplastic syndrome · United States
- Blood Cancer UnitedMyelodysplastic syndrome · United States
- HealthTree FoundationMyelodysplastic syndrome · United States
You are more than your diagnosis
Perspectives from people navigating life with Myelodysplastic syndrome.
Explore research for Myelodysplastic syndrome
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