Understanding MDS-related Anemia
What are myelodysplastic syndromes (MDS)?
Where do blood cells come from?
What happens to blood cells in MDS?
What happens to blood cells in MDS?
Low blood counts – Cytopenia
MDS and Acute Myeloid Leukemia (AML)
What is MDS-related anemia?
What is MDS-related anemia?
Symptoms of MDS-related anemia
Other diseases that cause similar symptoms to MDS-related anemia
Diagnosing MDS
Diagnosing MDS
Diagnosing MDS
Types of MDS: Multilineage and single lineage dysplasia
Types of MDS anemia: MDS with ring sideroblasts
Types of MDS anemia: MDS with isolated del(5q)
Types of MDS: MDS with excess blasts
Types of MDS: MDS with excess blasts
Types of MDS anemia: MDS unclassifiable
MDS type and your risk score
Knowing your type of MDS and risk category is important
Understanding MDS-related Anemia

*Please note: This slide show represents a visual interpretation and is not intended to provide, nor substitute as, medical and/or clinical advice.

What are myelodysplastic syndromes (MDS)?

MDS, or myelodysplasticsyndromes, are a group of blood cancers that develop from stem cells in the bone marrow. People with MDS do not produce enough healthy blood cells. It is most common in people over 65, but younger people sometimes get it.

There are several different types of MDS. Some types are more likely to develop into leukemia than others. Your MDS might have a high, medium or low risk of turning into leukemia.

Where do blood cells come from?

Blood cells come from the tissue inside your bones called bone marrow.

Healthy marrow includes many immature blood cells called stem cells. These develop into 3 major kinds of mature blood cells:

  • Red blood cells, or erythrocytes, which carry oxygen around the body,
  • White blood cells, or leukocytes, which help fight infection, and
  • Platelets, or thrombocytes, which help stop bleeding after injury.
What happens to blood cells in MDS?

In MDS, some stem cells have genetic damage.

As these abnormal stem cells grow at the expense of normal stem cells, the production of normal, mature blood cells goes down. Doctors may say you have “low blood counts”.

What happens to blood cells in MDS?

Another way MDS can reduce your number of healthy, mature blood cells is through a buildup of immature stem cells – called blasts – in the bone marrow or blood. Too many blasts means fewer healthy, mature blood cells. This is another cause of low blood counts.

Low blood counts – Cytopenia

Cytopenia is the medical term for low blood counts. There are different types of cytopenia, depending on which cells are low.

This slide show is about having too few red blood cells, called anemia. Having too few white blood cells is neutropenia and having too few platelets is thrombocytopenia.

MDS and Acute Myeloid Leukemia (AML)

About 30 percent of people with MDS develop a life-threatening blood cancer called acute myeloid leukemia, or AML. The risk of AML depends on the type of MDS you have and other factors. We will learn more about your risk later in this slide show.

What is MDS-related anemia?

Up to 80 percent of people with MDS have anemia (low red blood cell production) at some time during the disease.

What is MDS-related anemia?

Doctors can identify anemia based on any of 3 values in your complete blood count, or CBC. These are your red blood cell count, hemoglobin, and hematocrit. They will usually pick 1 of these to track over time.

Symptoms of MDS-related anemia

Symptoms of MDS-related anemia include fatigue, difficulty catching your breath, and heart palpitations (the feeling that your heart is fluttering, pounding fast, or skipping beats).

You might also feel tired, lightheaded, or short of breath after climbing stairs or doing other activities that take some effort.

Other diseases that cause similar symptoms to MDS-related anemia

Anemia can happen with conditions other than MDS. These include vitamin deficiency, bleeding disorders, severe kidney disease and cancer.

Infections and immune system diseases may also cause anemia. You will need tests to determine if you might have one of these other conditions.

Diagnosing MDS

Doctors learn if you have MDS, and determine what type it is, by doing blood tests, taking a sample of bone marrow in a procedure called bone marrow aspiration and biopsy, and often by genetic testing.

Diagnosing MDS

The pathologist who looks at your bone marrow biopsy will classify your MDS as a specific type. Currently, only 2 of these types have unique treatment options, but this might change as doctors discover more.

Diagnosing MDS

Your doctor will calculate a risk score based on which blood counts are low, your number of blasts, and any gene changes they see. These gene changes are usually acquired, not inherited, so they do not tend to “run in the family.”

If you have several family members with MDS or leukemia, you should have a special evaluation for an inherited condition.

Types of MDS: Multilineage and single lineage dysplasia

MDS with multilineage dysplasia is the most common type of MDS. One or more blood cell types are low in this type of MDS, and 2 or 3 types look abnormal in the bone marrow, where they are made. If red blood cells are affected, you have anemia.

MDS with single lineage dysplasia involves having 1 or 2 types of low blood cells, but only 1 that looks abnormal in the bone marrow.

These types are less likely to develop into AML than some other MDS types.

Types of MDS anemia: MDS with ring sideroblasts

Ring sideroblasts are groups of ring-shaped iron granules that form inside red blood cells in this type of MDS. One or more types of cells are also abnormally shaped. This type of MDS was previously called refractory anemia with ring sideroblasts. Anemia is more common in this type of MDS, and it rarely develops into AML.

Types of MDS anemia: MDS with isolated del(5q)

MDS with isolated del(5q) is a type of MDS where there are too few of 1 or 2 different types of blood cells. This often includes red blood cells. At least 1 cell type is abnormal. The bone marrow cells have also suffered a specific type of DNA damage (the loss of one part of chromosome 5). This type of MDS does not usually develop into acute myeloid leukemia, or AML.

Types of MDS: MDS with excess blasts

Immature blood cells called blasts can build up in the bone marrow or enter the bloodstream. These leukemia-like cells are part of a specific type of MDS, called MDS with excess blasts.

Types of MDS: MDS with excess blasts

You also have too few of at least 1 type of blood cell. If this includes red cells, you have anemia.

Previously, this type of MDS was called refractory anemia with excess blasts. About 25 percent of MDS is this type. It is the most likely to become AML.

Types of MDS anemia: MDS unclassifiable

Unclassifiable MDS is a term used to describe some rare types of MDS that don’t quite fit other types. Doctors are not yet sure of the outlook for people with this MDS type.

MDS type and your risk score

Doctors give each person a risk score to show how severe their MDS is.

You now know that some types of MDS have a low or very low risk of developing AML. You might not need treatment, or you might need to take medicine to improve your blood counts and avoid getting blood transfusions.

Other MDS types have an intermediate, high, or very high chance of causing life-threatening complications or turning into AML. You will likely need treatment to lower this risk, possibly right away.

Knowing your type of MDS and risk category is important

MDS is very different from person to person, so learning your type and risk group is important.

The more you know, the better decisions you can make about available treatment options.

Slide Show - Understanding MDS-related Anemia

This slide show provides an overview of myelodysplastic syndromes (MDS) and MDS-related anemia, including the causes, common symptoms, and diagnosis. It also describes the different types of MDS, risk scores, and explains that the disease can range in its severity.

  • Share with family and friends:

Click here to take our Myelodysplastic Syndromes (MDS) SURVEY
Your feedback is important to us! We will use your feedback to develop future areas of content about MDS which will help other patients, caregivers and families.

Please rate this content:
Animation - Understanding MDS-related Anemia
1. Animation - Understanding MDS-related Anemia
Slide Show - Understanding MDS-related Anemia
2. Slide Show - Understanding MDS-related Anemia

Expert Videos

What is MDS-related anemia? What causes it?
3. What is MDS-related anemia? What causes it?
What is a complete blood count? How does it show if I have anemia?
4. What is a complete blood count? How does it show if I have anemia?
What are the symptoms of MDS-related anemia?
5. What are the symptoms of MDS-related anemia?
What makes people with MDS more likely to have anemia?
6. What makes people with MDS more likely to have anemia?
What happens in MDS-related anemia over time?
7. What happens in MDS-related anemia over time?
What’s the prognosis for MDS-related anemia? How is prognosis determined?
8. What’s the prognosis for MDS-related anemia? How is prognosis determined?
Which questions should I ask my doctor about my MDS-related anemia?
9. Which questions should I ask my doctor about my MDS-related anemia?
How is MDS-related anemia diagnosed?
10. How is MDS-related anemia diagnosed?
How is MDS-related anemia screened and monitored?
11. How is MDS-related anemia screened and monitored?
Which other conditions have symptoms similar to MDS-related anemia?
12. Which other conditions have symptoms similar to MDS-related anemia?
If I have MDS-related anemia, what should I watch out for in daily life?
13. If I have MDS-related anemia, what should I watch out for in daily life?
Which specific diagnosis questions should I ask my doctor about my MDS?
14. Which specific diagnosis questions should I ask my doctor about my MDS?
How does acute myeloid leukemia (AML) relate to MDS?
15. How does acute myeloid leukemia (AML) relate to MDS?
Why is it important to understand the causes of unexplained anemia?
16. Why is it important to understand the causes of unexplained anemia?

Patient Videos

Abby’s story: How did you find out you had MDS-related Anemia?
17. Abby’s story: How did you find out you had MDS-related Anemia?
Barry’s story: How did you find out you had MDS-related Anemia?
18. Barry’s story: How did you find out you had MDS-related Anemia?
Bill’s story: How did you find out you had MDS-related Anemia?
19. Bill’s story: How did you find out you had MDS-related Anemia?
Abby’s story: How was your MDS-related Anemia diagnosed?
20. Abby’s story: How was your MDS-related Anemia diagnosed?
Barry’s story: How was your MDS-related Anemia diagnosed?
21. Barry’s story: How was your MDS-related Anemia diagnosed?
Bill’s story: How was your MDS-related Anemia diagnosed?
22. Bill’s story: How was your MDS-related Anemia diagnosed?

This educational activity has been developed by
the Myelodysplastic Syndromes Foundation, Inc and Mechanisms in Medicine Inc.

This activity is supported by an educational grant from Acceleron Pharma, Celgene Corporation, Jazz Pharmaceuticals, Novartis, and Takeda Oncology.

This website is part of the Animated Patient™ series developed by Mechanisms in Medicine Inc., to provide highly visual formats of learning for patients to improve their understanding, make informed decisions, and partner with their healthcare professionals for optimal outcomes.