Module 1. Understanding Myelodysplastic Syndromes

Understanding MDS
What is MDS?
What does bone marrow do?
What happens to bone marrow in MDS?
Low blood cell counts
What causes MDS?
Who gets MDS?
What are the risk factors for MDS?
What are the symptoms of MDS?
Symptoms of MDS, continued
Is MDS inherited?
How genetics plays a role in MDS
Can MDS be prevented?
What are the types of MDS?
Classification scoring system for MDS
Classification scoring system for MDS
Risk of acute myeloid leukemia (AML)
Risk scores and MDS prognosis
Knowing your type of MDS and risk category is important

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

What is MDS?

Myelodysplastic syndromes, or MDS, is a group of bone marrow failure disorders in which the bone marrow does not produce enough healthy blood cells.

Doctors consider MDS a form of blood cancer. It can turn into leukemia if it gets worse.

What does bone marrow do?

Bone marrow is the tissue in your bones that makes blood cells.

Healthy bone marrow makes immature cells called stem cells. These normally mature into different kinds of blood cells:

  • Red blood cells, which carry oxygen around the body,
  • White blood cells, which help fight infection, and
  • Platelets, which help stop bleeding after injury.

What happens to bone marrow in MDS?

In MDS, the stem cells may stay as immature cells, called “blasts”, or they may develop abnormally. This results in your body having too few healthy, mature blood cells to function well.

Low blood cell counts

Doctors call having too few healthy blood cells “cytopenia.” More specifically, having too few red blood cells is called anemia; having too few white blood cells is neutropenia; and having too few platelets is thrombocytopenia.

What causes MDS?

MDS happens when something affects the bone marrow cells, changing your DNA’s instructions for making blood cells.

Doctors often don’t know what affects the cells to cause MDS.

Who gets MDS?

MDS is most common in people over 65, but younger people sometimes get MDS. Men are more likely to get MDS than women.

What are the risk factors for MDS?

Certain factors can increase the risk for MDS, including:

  • Being over 60,
  • Previous chemotherapy or radiation,
  • Exposure to certain chemicals, and
  • Smoking

What are the symptoms of MDS?

The symptoms of MDS vary from person to person and depend on which blood cells are low.
Symptoms may include:

  • Fatigue, shortness of breath, or your heart skipping beats,
  • Fever or infections that won’t go away, and
  • Bleeding or bruising easily.

Symptoms of MDS, continued

Some people have no symptoms when they are diagnosed with MDS.

Your doctor might find that you have MDS after a routine blood test  called a complete blood count. This counts the number of red and white blood cells and platelets.

Is MDS inherited?

MDS is very rarely inherited. It is unusual to find two people with MDS in the same family, even if they are close relatives.

How genetics plays a role in MDS

However, MDS is related to your genes.
Genes contain DNA, the instructions that tell your body how to make different cells. If something changes your DNA, the cells it makes might be abnormal.

Can MDS be prevented?

There is no specific way to prevent MDS. But there are things you can do that might lower your risk. These include:

  • Not smoking,
  • Avoiding benzene and other cancer-causing chemicals,
  • Avoiding heavy metals such as lead and mercury, and
  • Avoiding radiation and certain chemotherapy drugs, if possible.

Ask your doctor about factors that increase your MDS risk.

What are the types of MDS?

There are several types of MDS. Doctors determine the type based on what the abnormal cells look like and the number of abnormal cells, blasts, and genetic abnormalities.

If your MDS progresses, your MDS type may change. It is very important to ask your doctor to explain which type of MDS you have.

Classification scoring system for MDS

Doctors use a scoring system to classify the severity of MDS. The score is based on the percentage of blast cells in the bone marrow and what types of abnormal cells and gene changes are present.

There are 5 severity categories, from very low to very high.

Classification scoring system for MDS

If your MDS score is low or very low, you might not need treatment for years.

If it is intermediate, high, or very high, you need treatment, possibly right away.

Risk of acute myeloid leukemia (AML)

About 30 percent of people with MDS get a life-threatening cancer called acute myeloid leukemia (AML). If your MDS risk is intermediate or high, chemotherapy may help prevent this.

Risk scores and MDS prognosis

People with high or very high risk scores may live just a year or two without treatment. People with lower risk scores have a better prognosis, or outlook. Your symptom level can also affect your MDS prognosis.

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 treatment.

Slide Show - Understanding Myelodysplastic Syndromes

This slide show provides an overview of myelodysplastic syndromes (MDS), and describes the causes, risk factors, symptoms, and different types of MDS. It also explains the role of bone marrow to produce blood cells (red blood cells, white blood cells, and platelets) and what happens to normal bone marrow in MDS.
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Animation - Understanding Myelodysplastic Syndromes
1. Animation - Understanding Myelodysplastic Syndromes
Slide Show - Understanding Myelodysplastic Syndromes
2. Slide Show - Understanding Myelodysplastic Syndromes

Expert Videos

What is MDS?
3. What is MDS?
What causes MDS?
4. What causes MDS?
What are the symptoms of MDS?
5. What are the symptoms of MDS?
What are the risk factors for MDS?
6. What are the risk factors for MDS?
Can MDS be prevented?
7. Can MDS be prevented?
Is MDS hereditary? Does genetics play a role?
8. Is MDS hereditary? Does genetics play a role?
What are the types of MDS?
9. What are the types of MDS?
How is MDS classified?
10. How is MDS classified?
How serious a cancer is MDS? What is the prognosis for MDS?
11. How serious a cancer is MDS? What is the prognosis for MDS?

Patient Videos

George's story: How did you find out you had MDS?
12. George's story: How did you find out you had MDS?
George's story: What has been the biggest challenge for you with your MDS?
13. George's story: What has been the biggest challenge for you with your MDS?
George's story: What has been the biggest surprise for you with your MDS?
14. George's story: What has been the biggest surprise for you with your MDS?
George's story: What advice do you have for other patients on their journey with MDS?
15. George's story: What advice do you have for other patients on their journey with MDS?
David's story: What advice do you have for other patients on their journey with MDS?
16. David's story: What advice do you have for other patients on their journey with MDS?

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

This activity is supported by charitable grants from 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 health care professionals for optimal outcomes.