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Myelodysplastic Syndrome in Children

  • Myelodysplastic syndrome (MDS) is a rare disease of the blood, only occurring in four out of every 1 million children. This rare disease keeps the body from properly producing blood cells and producing enough of them. MDS develops in the bone marrow, the soft, spongy center of the long bones that produces the three major blood cells. With this disease, the blood cells lose their ability to mature and function properly.

    How Dana-Farber/Boston Children's approaches myelodysplastic syndrome
    Dana-Farber/Boston Children’s Cancer and Blood Disorders Center is a national pediatric hematology oncology referral center, with one of the nation’s most experienced, multidisciplinary teams at diagnosing and treating pediatric MDS. Dana-Farber/Boston Children’s is the only large pediatric center in the U.S. that has been awarded the MDS Centers of Excellence award by the MDS Foundation.

    At Dana-Farber/Boston Children’s, children with myelodysplastic syndrome are treated through our Myelodysplastic Syndrome Specialty Program. We offer specialized diagnostic and treatment options, including direct referral to our Pediatric Stem Cell Transplant Program, one of the nation’s oldest and most experienced pediatric stem cell transplant programs.

    In almost all instances, MDS in children can be cured only through a bone marrow transplant, also known as a hematopoietic stem cell transplant (HSCT).  HSCT uses high doses of chemotherapy or radiation therapy to destroy all the cells in the bone marrow, healthy and diseased ones. Healthy cells from the bone marrow of another person—either a relative (usually a sibling) or an unrelated individual—are given through an infusion to the patient to restore the bone marrow that was previously destroyed by the chemotherapy and/or radiation therapy.
     
    What is the prognosis for a child with MDS?
    Your child's prognosis greatly depends on the specific diagnostic category of MDS, chromosomal abnormalities and the number of blasts in the blood and bone marrow and the availability of a suitable bone marrow transplantation donor. As with any serious medical condition, prognosis and long-term survival can vary greatly from child to child. Prompt medical attention and aggressive therapy are important for the best prognosis.

    What is the latest research on MDS?
    At the moment, very little is known about the initiating events that lead to MDS; therefore, limited specific therapies exist, and a hematopoietic stem cell transplant is currently the only treatment that can cure the disease.

    Dana-Farber/Boston Children’s received grant funding from the National Institutes of Health (NIH) to establish the first nationwide Pediatric MDS and BMF Registry.

    To learn more about participating in the registry, please contact our research nurse, Grace Yoon, at 888-5-pediMDS, or email us at mds@childrens.harvard.edu. For more information, visit our website: www.PediMDS.org.

    Clinical Trials
    For many children with rare or hard-to-treat conditions, clinical trials provide new options.

    Learn more
    Find more in-depth information about myelodysplastic syndrome (MDS) on the Dana-Farber/Boston Children’s website.


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