Health Topic

Myelodysplastic syndrome

Disease Information

Overview

When people Google 'pediatric MDS', almost everything they'll find is information on adult MDs. However, there are a lot of differences. That's why it's important that your child be treated by an experienced pediatric specialist.

--Inga Hofmann, MD, PhD

Normally, the bone marrow produces all of the blood cells your child’s body needs. Myelodysplastic syndrome (MDS) is a rare disease that results in improper and insufficient blood cell formation. Most of the time it develops in older patients (over 60 years old), but it can occur at any age and affect children as well.

  • MDS occurs when the bone marrow does not properly produce sufficient numbers of healthy red blood cells, white blood cells and platelets.
     
  • MDS is very rare in children, and children get different types of MDS than adults. It only occurs in 4 out of every million children.
     
  • MDS may be hereditary or caused by another event or illness, but often there is no known cause.
     
  • MDS used to be called “smoldering leukemia” or “pre-leukemia,” but only about one-third of cases of MDS actually progress to leukemia.
     
  • In most instances, the only cure for children with MDS is a stem cell transplant.

How Children’s Hospital Boston approaches myelodysplastic syndrome

Children’s Hospital Boston is a national pediatric hematology oncology referral center, with one of the nation’s most experienced, multidisciplinary teams at diagnosing and treating pediatric MDS.

If your child is cared for at Children’s, she’ll be seen through our Pediatric Myelodysplastic Syndrome Specialty Care Program.

  • We offer specialized diagnostic and treatment options, including stem cell transplantation.
     
  • We offer direct referral to Dana-Farber/Children’s Hospital Cancer Center’s Pediatric Stem Cell Transplant Program, one of the nation’s oldest and most experienced pediatric stem cell transplant programs.
     
  • Children’s Hospital Boston has recently established the first nationwide patient registry and tissue repository for Pediatric MDS and bone marrow failure disorders. This National Institutes of Health (NIH)-funded project will help us better understand MDS and identify potential new treatments.

 

Durkin Family Overcomes Triple Dose of MDS

ABC News profiles three siblings who are being treated at the Dana-Farber/Children’s Hospital Cancer Center for myelodysplastic syndrome (MDS) - a rare blood disorder that affects the bone marrow. Boston Children’s Michelle Lee, MD, PhD, and nurse Julie Waitt, were interviewed about the siblings’ treatments at Dana-Farber/Children’s Hospital Cancer Center. Read more.

Reviewed by Inga Hofmann, MD, PhD
 © Children’s Hospital Boston, 2010

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