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Learn MoreMyelodysplastic syndromes (MDS) are a group of rare disorders in which the bone marrow does not make enough healthy blood cells. Bone marrow is the spongy material inside bones that makes blood stem cells. These stem cells make mature blood cells found in the blood stream.
Healthy bone marrow makes 3 kinds of blood cells:
In MDS, stem cells in the bone marrow are damaged and can’t make enough healthy blood cells. The new blood cells are abnormal and do not work properly. The blood cells may die in the bone marrow or after entering the bloodstream. This can lead to dangerously low numbers of one or more types of blood cells.
MDS is very rare in children. About 4 in 1 million children are diagnosed with MDS each year. MDS in adults is more common and usually has different causes than MDS in children.
Complications of MDS include serious infections, bleeding, and feeling tired or having pale skin. MDS also increases the risk of developing acute myeloid leukemia (AML), a cancer of the blood and bone marrow.
Signs and symptoms of MDS can be hard to notice in the early stages of the disease. MDS symptoms are often related to low blood cell counts. The symptoms can vary from person to person but may include:
For many children with MDS, the cause is unknown. When MDS is caused by unknown factors, it is called primary MDS. Having an overactive immune system might play a role in some patients.
Secondary MDS is caused by known factors. Factors that can cause MDS include previous treatment with chemotherapy or radiation, previous aplastic anemia, and inherited gene changes (mutations).
MDS can be caused by gene changes that affect the whole body (germline mutation). This can be inherited from parents or can develop before birth. Sometimes multiple people in one family can be affected, which is called familial MDS. Types of genetic conditions that cause MDS include bone marrow failure syndromes and MDS predisposition syndromes.
MDS is diagnosed based on your child’s medical history, physical exam, and lab tests. Your doctor may ask you about any changes in bleeding or bruising, recent illnesses, or medicines your child is taking.
Lab tests for MDS may include:
There are 2 main types of pediatric MDS:
RCC and MDS-EB can be identified based on the number of blasts (immature blood cells) in the bone marrow. In healthy people blasts, make up less than 5% of the cells in bone marrow. The higher the blasts, the more severe the MDS.
In RCC, the number of blasts is not high (less than 5%).
In MDS-EB, the number of blasts is high (more than 5%).
Children with RCC may not need therapy. But their condition may get worse over time. RCC can also progress to MDS-EB. Acute myeloid leukemia (AML) can develop if the number of blast cells gets too high.
Many children with less severe forms of MDS can remain stable for years without treatment. It is important to have close monitoring by a pediatric hematologist/oncologist, a doctor who specializes in blood disorders and cancers.
Treatments for MDS include:
The prognosis and long-term survival of children with MDS varies greatly by:
Patients with MDS can have serious complications, such as severe infections, bleeding, heart problems, or AML. Some children with MDS can be cured with a bone marrow transplant. Children who need transfusions or have developed blasts have a less favorable prognosis.
If your child has been diagnosed with MDS, there may be certain lifestyle changes that can help manage the condition and prevent problems. Here are some possible ways to help manage MDS:
Keep all medical appointments: Your child may need regular lab tests and monitoring. Be sure to keep all appointments and seek medical care if your child’s condition changes.
Take steps to prevent infection: Wash hands often, keep patient areas clean, and stay away from people who are sick.
Don’t give your child any medicine without talking to your doctor: Some medicines can increase the risk of bleeding or interact with other medicines your child is taking. Talk to your care team before giving your child any medicine or supplement.
Alert others of your child’s condition: Be sure that others know about your child’s medical condition and know what to do if an accident or injury occurs. Tell all health care providers about your child’s diagnosis and any medicines they take. This is especially important before any medical or dental procedures.
Know what activities to avoid: If your child has fewer red blood cells, they may get tired more easily or get out of breath. Be sure your child does not overdo physical activity. When platelet counts are low, your child is at higher risk of bleeding. Your child should avoid contact sports, rough play, and activities that could involve falls or injury to the head or stomach.
Call your health care provider if your child:
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Reviewed: June 2024
Acute myeloid leukemia (AML) is a cancer of the blood and bone marrow. About 500 U.S. children are diagnosed each year.
Aplastic anemia happens when the bone marrow does not make enough blood cells.
Pancytopenia is a disorder that causes a decrease in all three blood cell types: red blood cells, white blood cells, and platelets. Learn about pancytopenia.