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Myelodysplastic syndromes are a group of diseases in which the bone marrow does not make enough healthy blood cells. It is also called preleukemia or smoldering leukemia. Learn about myelodysplastic syndromes and find information on how we support and care for children and teens before, during, and after treatment.
The Blood Disorders Center provides comprehensive diagnosis, treatment and preventive services for children and adolescents with all forms of non-malignant blood disorders and diseases.
The Blood Disorders Center features programs specializing in the treatment of blood clots, bone marrow failure, hemophilia, myelodysplastic syndrome, platelet function disorder, rare anemias and iron disorders, sickle cell disease and thalassemia.
From your child's first appointment, you will meet with medical experts and other professionals to help with all aspects your family's well-being and peace of mind during your child's care.
A highly experienced team of hematologists, immunologists, pathologists, registered nurses, social workers, clinical dietitians and other health professionals will work together to create a comprehensive care plan for your child.
We believe that families are especially important in the long-term health management plans of children with blood disorders, so we involve parents and families in making decisions about a patient's care throughout treatment.
Learn more about our Blood Disorders Center.
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.
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 Cancer and Blood Disorders Center, 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.
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.
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 firstname.lastname@example.org. For more information, visit our website at www.PediMDS.org.
For many children with rare or hard-to-treat conditions, clinical trials provide new options.
Learn more about myelodysplastic syndrome (MDS) on the Dana-Farber/Boston Children's website.
Myelodysplastic syndrome (MDS) is a rare disease of the blood. 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.
Dana-Farber/Children's Hospital Cancer Center is a national pediatric hematology/oncology referral center, with one of the nation's most experienced, multidisciplinary team at diagnosis and treating pediatric MDS.
Myelodysplastic syndrome (MDS) is a rare disease of the blood. 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 develops in the bone marrow, the soft, spongy center of the long bones that produces the three major blood cells:
MDS occurs when the bone marrow does not properly produce sufficient numbers of healthy red blood cells, white blood cells and platelets. With this disease, the blood cells lose their ability to mature and function properly. In the normal bone marrow growth and development of blood cells is carefully controlled to produce the correct number of each type of blood cell to keep the body healthy. All blood cells (while blood cells, red blood cells and platelets) are made from the start in the bone marrow from a single type of a cell called a stem cell. Stem cells make up a very small portion of all the cells in the bone marrow. The stem cells are stored in the bone marrow until a specific type of cell is needed, for example a red cell. When more red cells are needed the bone marrow activates the stem cells in reserve to rapidly produce more red cells. At that time the stem cell matures and develops more and more into a red cell.
MDS used to be called smoldering leukemia or pre-leukemia, but only about one-third of cases of MDS actually progress to leukemia. Leukemia is a cancer of the blood and bone marrow. As you read further below, you will find general information about MDS.
MDS occurs in 4 out of one million children.
Many patients with MDS have a chromosomal abnormality associated with the disease; however, these changes are not inherited from someone in the family. Instead, these abnormalities are changes in the chromosomes that only exist in the diseased blood and bone marrow cells.
Physicians have identified several types of MDS, based on how blood and marrow cells appear under the microscope. However, they are largely classified by the fraction of blasts (immature blood cells) found in the marrow and blood. The subtypes that have been identified in children are somewhat different then the ones physicians have identified for adults and older people. The types of MDS in children are:
When MDS predominantly affects white blood cells, the immature forms of white blood cells (blasts) increase in number and the number of mature white blood cells typically decrease.
The most common symptoms of MDS are:
It is important to understand that the symptoms of MDS may resemble other blood disorders or medical problems, some of them which are very common and simple, others which could be more serious. The symptoms listed above are common presentations of the disease, but do not include all possible symptoms. Children may experience symptoms differently.
In addition to a complete medical history and physical examination, myelodysplastic syndrome (MDS) can only be diagnosed accurately by a full evaluation of the blood and bone marrow. To diagnose MDS the following test might be preformed:
MDS is often more difficult to diagnose than other disorders of the bone marrow and takes an expertise physician and pathologist to make the correct diagnosis. This is particularly true for children. Therefore the diagnostic process may take time and occasionally repeated blood and bone marrow tests are needed to make the diagnosis with certainty.
Treatment usually begins with supportive care, which intends to control and treat the consequences of the disease, but not to eradicate it.
Chemotherapy is usually used for the treatment of cancers, including leukemia. However, chemotherapy is not typically useful for the treatment of MDS.
In almost all instances, MDS in children can only be cured through a bone marrow transplant also known as a hematopoietic stem cell transplant (HSCT).
Continuous follow-up care to determine response to treatment, detect recurrent disease, and manage late effects of treatment is critical. Frequent examinations by a specialist and laboratory test (including repeat bone marrow examinations) are most important for a successful management of disease.
Prognosis greatly depends on:
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. Continuous follow-up care is essential for the child diagnosed with MDS. Side effects of chemotherapy, as well as second malignancies, can occur in survivors of MDS. New methods are continually being discovered to improve treatment and to decrease side effects of the treatment for the disease.
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 transplantation is currently the only curative option to treat the disease.Dana-Farber/Children's Hospital Cancer Care's Pediatric Stem Cell Transplant Program is one of only eight institutions around the country investigating the use of umbilical cord transplantation for children with MDS.Recently, Boston Children's Hospital received grant funding from the National Institute of Health (NIH) to establish the first nationwide patient registry and tissue repository for Pediatric MDS and bone marrow failure disorders.
Many children with cancer receive treatment in the outpatient setting, which allows them to stay in school and continue to develop intellectually and socially. However, returning to school can be an emotional experience; our Back to School Program is designed to ease your child's transition back to the classroom.
Concierge Services is your one-stop place to learn about Dana-Farber programs, services and resources, as well as information on getting around Boston, finding lodging or restaurants, and activities in the area.
The Expressive Arts Therapy program, sponsored by the Leonard P. Zakim Center for Integrative Therapies, provides adult patients, family members, and caregivers with a variety of options to support well-being during cancer treatment. From live music meditation to painting technique workshops, the program offers a range of creative outlets to suit every interest.
Dana-Farber and Children's Hospital, including parking facilities, are fully accessible to people with disabilities. There are wheelchairs at the main entrance, and security staff can provide personal assistance. We also have many educational materials available in large print and audiotape formats.
The Ethics Consultation Service is available for patients and families who may be facing difficult decisions and choices regarding care. Our goal is to bring together patients, families and health care providers to talk about ethical concerns and help everyone involved arrive at a resolution that is right for all.
Find practical tips and suggestions for individuals caring for a family member or friend with cancer, including creating a caregiving plan, finding community resources, and looking after your own well-being.
Friends' Place provides personal consultations to help cancer patients of all ages cope with changes in physical appearance that result from cancer treatment. Our experienced, compassionate team provides fittings for compression garments or breast prostheses, helps with wigs and other head coverings, and offers make-up and skincare advice.
The Friends' Corner Gift Shop, located on the first floor of the Yawkey Center for Cancer Care, offers a wide selection of unique gifts and everyday items for patients, families and staff.
Every year, thousands of patients with cancer from around the world come to Dana-Farber for their care. We provide a wide array of logistical and other services for individuals who live outside the United States.
Dana-Farber provides interpreting services for patients whose first language is not English. Interpreters may be requested for any activity, including registration, booking appointments, attending treatments and exams, support groups, and meetings with doctors and other members of your health care team.
Just for Teens provides programs and activities for teens and young adults with cancer at the Jimmy Fund Clinic and Children's Hospital Boston. We offer activities and events both inside and out of the hospital so that you have creative ways to pass the time and can meet other teens who are going through similar experiences.
Our nutritionists are registered dietitians who can assist you in planning an optimal diet during any stage of your cancer journey, cope with any side effects you may experience, and answer your questions about the latest findings on cancer and nutrition.
The Eleanor and Maxwell Blum Patient and Family Resource Center and its satellite resource rooms are staffed by health care professionals and provide computer stations, books, brochures, videos, and CDs to help you find information and support on a variety of issues about cancer treatment and care.
Patients websites help friends and family members stay up-to-date on their loved ones' condition and write messages of support and encouragement.
The Dana-Farber pharmacy fills prescriptions for all pediatric and adult patients. Our pharmacists are an extension of the patient care team and work closely with your physicians to provide seamless, convenient, safe care.
More than 1,200 Dana-Farber patients and their families have enjoyed free trips to baseball games, theater shows, museums, and other attractions this year through the Recreational Resources program.
Through all stages of cancer treatment and survivorship, our Spiritual Care staff is available 24 hours a day to provide emotional and spiritual support for adults and pediatric patients and family members.
Integrative therapies, also known as complementary therapies, range from acupuncture and massage to nutritional guidance and music therapy. Patients treated at the Zakim Center credit its services with easing nausea, improving circulation, and reducing pain, stress, and anxiety associated with cancer treatment.
In this video, Dr. Inga Hofmann talks about her work as a pediatric oncologist at Dana-Farber/Children's Hospital Cancer Center.
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