What Are Myelodysplastic Syndromes?

Written by Eric Metcalf, MPH, Frances Gatta
Medically Reviewed by Shruthi N, MD on November 21, 2024
10 min read

Myelodysplastic syndromes (MDS) are a rare group of disorders in which your body no longer makes enough healthy blood cells. With MDS, your bone marrow cells become abnormal and make blood cells that don’t grow or work like normal cells. They also die earlier than normal cells.

You might sometimes hear it called a “bone marrow failure disorder.”

Most people who get it are 65 or older, but it can happen to younger people, too. It is more common in men. The syndromes are a type of cancer.

Some cases are mild while others are more severe. It varies from person to person, depending on the type you have, among other things. In the early stages of MDS, you may not realize anything is even wrong. Eventually, you may start to feel very tired and short of breath.

Other than stem cell transplants, there is no cure for MDS. But there are a number of treatment options to control symptoms, prevent complications, help you to live longer, and improve the quality of your life.

Myelodysplastic syndrome vs. leukemia?

Leukemia means cancer of the blood cells.

If you have a myelodysplastic syndrome, you’re at risk of developing acute myeloid leukemia (AML), a cancer of the bone marrow and the blood. It causes symptoms that look like flu symptoms, including weakness, tiredness, fever, and bleeding of your gums or nose. About 1 in 3 people with myelodysplastic syndromes develop AML.

MDS and AML show similar symptoms, including paleness, bleeding, and tiredness. However, AML develops much faster, is more severe, and is a serious medical emergency.

Your bones support and frame your body. Inside them is a spongy material called bone marrow, which makes different types of blood cells. They are:

  • Red blood cells, which carry oxygen in your blood
  • White blood cells of different types, which are key elements of your immune system
  • Platelets, which help your blood to clot

Your bone marrow should make the right number of these cells. And these cells should have the correct shape and function.

When you have a myelodysplastic syndrome, your bone marrow isn't working the way it should. It makes low numbers of blood cells or defective ones.

About 12,000 Americans get different types of MDS each year. The chances of getting it become higher as you age.

Some other things that raise your chance of getting MDS include:

Cancer therapy. You can get this syndrome 1 to 15 years after receiving certain forms of chemotherapy or radiation. You may hear your doctor or nurse call this "treatment-related MDS.”

You might be more likely to get MDS after treatment for acute lymphocytic leukemia in childhood, Hodgkin's disease, or non-Hodgkin's lymphoma.

Cancerdrugs linked to MDS include:

  • Chlorambucil (Leukeran)
  • Cyclophosphamide 
  • Doxorubicin 
  • Etoposide (Etopophos)
  • Ifosfamide (Ifex)
  • Procarbazine (Matulane)

Tobacco. Smoking also raises your chance of getting MDS.

Benzene. This chemical with a sweet odor is widely used to make plastics, dyes, detergents, and other products. Too much contact with this chemical is linked to MDS.

Inherited conditions. Some conditions passed on from your parents increase your chances of having myelodysplastic syndrome. These include:

  • Down syndrome. Also called trisomy 21, children with this are born with an extra chromosome that can hamper mental and physical growth.
  • Fanconi anemia. In this condition, the bone marrow fails to make enough of all three types of blood cells.
  • Bloom syndrome. People with this condition are  rarely taller than 5 feet and easily get a skin rash from sunlight.
  • Ataxia telangiectasia. This affects the nervous and immune systems. Children who have it have trouble walking and staying balanced.
  • Shwachman-Diamond syndrome. This keeps your body from making enough white blood cells.

Blood diseases. People with various disease of the blood have a greater chance of getting MDS. They include:

  • Paroxysmal nocturnal hemoglobinuria. This life-threatening disorder affects your red blood cells (which carry oxygen), white blood cells (which help fight infection), and platelets (which help your blood clot).
  • Congenital neutropenia. People with this don’t have enough of a certain kind of white blood cell, so they easily get infections.

Often, myelodysplastic syndromes cause no symptoms early in the disease. But its effect on different types of blood cells can cause warning signs that include:

  • Constant tiredness. This is a common symptom of anemia, caused when you don’t have enough red blood cells
  • Unusual bleeding
  • Bruises and tiny red marks under the skin
  • Paleness
  • Shortness of breath when you’re exercising or being active

Call your doctor if you have these symptoms and concerns about MDS.

To figure out whether you have one of the myelodysplastic syndromes, your doctor will ask you about your symptoms and history of other health problems. They might also:

  • Do a physical exam to check for other possible reasons for your symptoms
  • Take a sample of blood to count the different types of cells
  • Get a sample of bone marrow for analysis. They or a technician will insert a special needle into your hip bone or breastbone to remove the sample.
  • Order a genetic analysis of cells from the bone marrow

The World Health Organization (WHO) classification system has identified six main types of MDS:

  1. MDS with multilineage dysplasia (MDS-MLD). This is the most common type of MDS. If you have this type, it means at least 10% of two or more blood cell types aren’t formed normally or working well. 

  2. MDS with single lineage dysplasia (MDS-SLD). With this type, only one blood cell is abnormal and not working properly. If you have this type, how your condition turns out will likely be more favorable than the most common type. You might also not need treatment, and it’s unlikely that your condition will become AML. But this type is rare.

  3. MDS with ring sideroblasts (MDS-RS). At least 15% of early red blood cells have formed a ring around their center with this type. MDS-RS is also uncommon and unlikely to lead to AML.

  4. MDS with excess blasts (MDS-EB). When you have MDS-EB, you’ll have more very early forms of blood cells in your bone marrow and blood than healthy blood cells. At least one type of blood cell will also be unusually low. 

  5. MDS with isolated del(5q). In this type, your bone marrow cell will be missing a part of chromosome number 5. At least one blood cell type will look unusual, and you’ll have lower-than-usual amounts of one or two blood cell types. This type is rare but has a favorable outlook. It’s unlikely that you’ll develop AML with this type, too.

  6. MDS, unclassifiable (MDS-U). Your doctor might classify your MDS under MDS-U when your condition doesn’t meet the criteria for the other types. This case is very rare.  

Doctors consider a number of things when figuring out which kind of MDS a person has. These include:

How many types of blood cells are affected. In some types of myelodysplastic syndromes, only one kind of blood cell is abnormal or low in number, such as red blood cells. In other kinds of MDS, more than one type of blood cell is involved.

The number of "blasts" in the bone marrow and blood. Blasts are blood cells that didn't mature fully and don’t work properly.

Whether the genetic material in the bone marrow is normal. In one type of MDS, the bone marrow is missing a portion of a chromosome.

The type of myelodysplastic syndrome you or a loved one has will determine the progress of the disease.

With some types, you’re more likely to develop acute myeloid leukemia. It can get worse quickly if it’s not treated.

With most types of MDS, the chance of leukemia is much lower.

Your doctor can talk to you about the specific type of myelodysplastic syndrome you have and how it's likely to affect your health and life.

Other things that affect your case include:

  • Whether or not the myelodysplastic syndrome developed after earlier cancer treatment
  • How many blasts are found in your bone marrow

Your doctor will decide on a treatment based on on the type of MDS you have and how severe it is. Your overall health and age can also play a role in treatment options.

You and your doctor may just take a watchful waiting approach. Your doctor might just want to do regular checkups if your symptoms are mild and your blood counts are holding up OK.

Treatment options include:

Stem cell transplant

This is the only treatment that can possibly cure myelodysplastic syndrome. Your doctor will order a series of chemotherapy or radiation sessions to destroy cells in your bone marrow. You’ll then get stem cells from a donor. Stem cells can come from bone marrow or they can come from blood. These cells then start to make new blood cells in your body.

Stem cell transplants are generally only an option if you're younger and are generally in good health. Older people with MDS or those who aren't in good health may not be able to get stem cell transplants. 

When stem cell transplants aren't an option, other treatment options include:

Supportive care

Supportive care for MDS includes:

  • Antibiotics for infections
  • Erythropoiesis-stimulating agents. These medications increase the number of red blood cells in the body and minimize anemia effects.
  • Blood transfusions. Blood transfusions work by replacing damaged blood cells with red blood cells or white blood cells. 
  • Platelet transfusion. This is a treatment option for people who may have a procedure that could cause bleeding
  • Iron chelation. This type of treatment is recommended if you get too much iron in your blood from having many blood transfusions or are having a stem cell transplant (too much iron can affect the success of the transplant)

Drug therapy

  • Chemotherapy drugs. In people with low-risk forms of MDS, these types of drugs (like azacitidine [Vidaza] and decitabine [Dacogen]) might be a first choice. They can help to relieve symptoms and help lessen the number of needed transfusions.

    Standard chemotherapy drugs may also be an option for people who are considered high risk or who are likely to develop AML, but not for those who have other medical problems or are older.

  • Immunosuppressive therapy. This treatment includes a serum (antithymocyte globulin) that tries to stop your immune system from attacking your marrow. That can eventually help you rebuild your blood count and minimize the need for blood transfusions.

Chemotherapy with stem cell transplants

If you undergo chemotherapy, healthy blood cells are also destroyed. After chemotherapy, stored stem cells can be given through an infusion, restoring blood cells.

 

You can’t prevent MDS, but you can reduce your risk of having it by:

  • Not smoking, or quitting smoking if you already do
  • Reducing your exposure to radiation and cancer-causing chemicals like benzene

How you live with MDS depends on how severe your condition is. Some people may not have any symptoms and might not need any treatment. Others may only need regular blood tests every few months to check for changes in their blood cells. In more severe cases, you may need treatment options like blood transfusions or chemotherapy.

Here are some things to improve your health and well-being while living with MDS:

  • To reduce your risk of infection, wash your hands frequently, cook your food well, avoid eating raw foods, and avoid being in close contact with people who are ill.
  • Quit smoking or tobacco. You can find resources for quitting on the CDC’s page or get the help of your doctor. 
  • Be as active as possible, eat healthy foods, and take your sleep seriously.
  • Find and join a support group to meet with and learn from others who can relate to your experience with MDS. You can find support groups at the MDS Foundation and Cancer Survivors Network.
  • To relax your body and clear your mind, practice mindfulness and meditation practices like deep breathing, yoga, and journaling.
  • Keep in touch with your loved ones and ask them for help when needed.
  • Get professional mental health help from a therapist or counselor if living with MDS feels too overwhelming. 

Myelodysplastic syndromes are conditions when the cells that make blood in the bone marrow stop working normally, causing your body to produce more abnormal or faulty blood cells and not enough healthy ones. You may have symptoms like tiredness, paleness, bruising easily, shortness of breath, or no symptoms. See your doctor if you have these symptoms or feel unwell in your body. They’ll recommend the best treatment for you after confirming you have MDS and the type you have.

What is the life expectancy of someone with myelodysplastic syndrome?

The life expectancy of someone with MDS varies from less than a year to about 9 years. 

How serious is myelodysplasia?

How serious MDS depends on your type, your symptoms, and how fast or quickly they happen. But MDS can become so serious that it affects your daily functioning and can progress to life-threatening leukemia. 

How fast does MDS turn into leukemia?

MDS can turn into leukemia within a few months to several years, depending on the number of normal and abnormal blood cells you have and the type of MDS.

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