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Blood Disease: Myelodysplastic Syndrome (And what you can do to help)

May 19, 2023 by Gift of Life News

What is Myelodysplastic Syndrome?

Myelodysplastic syndrome (MDS), also called myelodysplastic disorder, is a group of life-threatening blood cancers characterized by the development of abnormal (dysplastic) bone marrow cells.  

How does MDS impact one’s health? 

The abnormal bone marrow cells found in MDS produce defective blood cells, and the patient’s number of normal blood cells drops. Different types of blood cells can be affected, but the most common is red blood cells. MDS can progress and become Acute Myeloid Leukemia, and is sometimes called “pre-leukemia”.

The syndrome can cause anemia and other low blood cell counts, fatigue, pale skin, petechiae (a spotted rash caused by bleeding under the skin), infections, enlarged spleen, weight loss, fever and bone pain. 

Nearly half of patients have no obvious symptoms and the condition is discovered during routine medical examination and blood tests. 

What causes MDS?

Known causes include exposure to benzene, pesticides and herbicides, hydrocarbons (components of petroleum and natural gas), a history of smoking, and previous cancer treatment with chemotherapy and/or radiation therapy.

MDS is most commonly found in individuals above 60 years old, and is more common in men than women. MDS in children and young adults is often found to be related to an underlying genetic condition such as Fanconi anemia, Diamond Blackfan anemia, and similar conditions. Children with Down syndrome are susceptible to MDS.

However, MDS can often develop without any particular cause being identifiable.

How can a transplant cure MDS? 

Treatments exist for the symptoms of MDS and the shortage of healthy blood cells the condition causes, but a blood stem cell or bone marrow transplant is the only known cure. Prior to the transplant, the patient’s non-functioning marrow is cleared by chemotherapy/radiation therapy and replaced with healthy cells donated by a matching family member or matching unrelated donor. These healthy stem cells form new bone marrow then produce new, fully-functioning blood cells. 

For the transplant to work, the donor and the patient must have matching immune system factors, called Human Leukocyte Antigens (HLA). People get their HLA types from their parents, one half from each parent, similar to how we inherit hair and eye color. Only about 30% of patients can find a match with another family member; the other 70% of patients must search the registry for an unrelated donor. People with the same ethnicity have the best chance of being HLA matches, due to the way these factors are inherited. 

What can I do to help? 

Because the only known cure for MDS is a stem cell or bone marrow transplant, the best way to help is by joining the registry so more donors are available. Anyone 18 to 35 years old and in general good health can join the registry by completing a cheek swab kit at an in-person drive or by ordering a kit to have sent to your home. 

Gift of Life is always seeking volunteers to help with a wide range of activities, including running donor recruitment tables at various events, making presentations about joining the registry, helping during fundraising events, and more. Student volunteers can earn community service hours. To get started, visit our Volunteer Network page.