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What are Myelodysplastic Syndromes?

Myelodysplastic Syndromes (MDS) are a group of diseases caused by bone marrow failing to produce a normal amount of healthy and mature blood cells. This leads to lower counts of one or more types of blood cells.

In a healthy individual, bone marrow creates immature cells called stem cells. These stem cells will then mature into either red blood cells, white blood cells, or platelets. In an individual with MDS, the stem cells created by bone marrow do not always mature into healthy blood cells. These immature cells will then either collect in the bone marrow or have a shortened life span. Both of those outcomes lead to low blood counts. MDS is primarily diagnosed in adults over the age of 65, but can affect anyone at any age. 

MDS Diagnosis and Survival Statistics 

Between 12,000 - 20,000 people are diagnosed with MDS in the U.S. every year with around 87,000 new cases worldwide. It is estimated that between 60,000 - 170,000 people are currently living with MDS in the United States. About 30% of all MDS patients progress into Acute Myeloid Leukemia (AML).

For patients with Low Risk MDS (LR-MDS) who do not receive a bone marrow transplant, average survival is 6 years. Patients with High Risk MDS (HR-MDS) have an average survival of around five months.

MDS Median Survival

There are two systems to determine MDS survival. The first is the revised International Prognostic Scoring System (IPSS-R). This system is based on people diagnosed many years ago who did NOT receive treatment for their MDS.

IPSS-R Risk 

Median Survival

Very low

8.8 years

Low

5.3 years

Intermediate 

3 years

High

1.6 years

Very high

.8 years

 

The second system used to determine MDS Survival is the WHO Prognostic Scoring System (WPSS) It is important to note that this system does not include MDS patients with secondary MDS (MDS caused by chemotherapy use) 

WPSS Risk

Median Survival

Very Low

11.8 years

Low

5.5 years

Intermediate 

4 years

High 

2.2 years

Very High

9 months

 

Helpful MDS Definitions

Term

Definition

Stem Cells

Rapidly dividing cells in the bone marrow. Stem cells produce new blood cells to enter the bloodstream once they've matured

Cytopenias

Low blood cell counts

Anemia

Low RED blood cell count

Neutropenia

Low WHITE blood cell count

Thrombocytopenia

Low PLATELET count

AML

Acute Myeloid Leukemia 

MDS Symptoms

Symptoms of MDS are related to low blood counts. Low counts of different blood cell types can result in different symptoms. 

Anemia (low red blood cell count)

MDS patients with anemia can be tired and have low energy. More severe anemia can include shortness of breath, pale skin and chest pain. 

Neutropenia (low white blood cell count)

Neutropenia lowers the body's ability to fight infections. Common infections can include skin, sinus, lung, and urinary tract infections. Fever is commonly present.

Thrombocytopenia (low platelet count)

Thrombocytopenia leads to loss of blood's ability to clot. This results in easy bruising and bleeding. Nosebleeds and bleeding from the gums is common.

Causes/Risk Factors

The exact cause of MDS is still unknown. However, there are several factors that have been linked to MDS.

Inherited Genetic Mutations

Some people may be more likely to develop MDS based on genes they inherit from one or both parents. This is diagnosed as Primary MDS if there are not identifiable external factors causing the MDS.

Cancer Treatment

Long-term use of radiation or chemotherapy drugs increases risk of MDS. This is diagnosed as Secondary MDS if triggered by cancer treatment.

Age

75% of patients diagnosed with MDS are over the age of 60, so MDS is very uncommon in anyone younger than 60 although it can affect young adults and children.

Gender

MDS is more common in men than women, although we aren’t sure why yet.

Lifestyle

Smoking is a linked risk factor.

MDS is not a contagious disease, so it cannot be passed on through interaction with a person who has MDS.

 

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