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Last updated on April 21, 2014 at 5:04 EDT

AA&MDSIF Responds to Robin Roberts’ Announcement of MDS Diagnosis

June 13, 2012

ROCKVILLE, Md., June 13, 2012 /PRNewswire/ — This week’s announcement by ABC News’ Robin Roberts that she has been diagnosed with MDS (myelodysplastic syndrome) has drawn national attention to this bone marrow failure disorder. Since 1983, the Aplastic Anemia & MDS International Foundation (www.AAMDS.org) has provided education and support to patients with MDS.

MDS is a group of rare disorders affecting the bone marrow. People with MDS have an abnormal number of red and white blood cells, as well as platelets. MDS occurs when bone marrow cells do not properly develop into mature blood cells. Instead, these cells remain in the bone marrow in an immature state. The symptoms and the course of MDS may vary greatly from person to person depending upon which blood cells are affected. Importantly, MDS is not a communicable or hereditary disease.

Between 15,000 and 18,000 cases of MDS are diagnosed each year in the United States, with tens of thousands more people living with the disease.

Most cases occur with no readily identifiable cause, known as de novo MDS. Approximately fifteen percent of cases are identified as secondary MDS. Secondary MDS has been linked to certain exposures, including benzene or other organic solvents, smoking, and prior chemotherapy and radiation treatment. The latter is the suspected link in the case of Ms. Roberts.

“This week’s courageous announcement by Robin Roberts that she has been diagnosed with MDS has focused national attention on our mission and message,” said John Huber, Executive Director of the Aplastic Anemia & MDS International Foundation (AA&MDSIF). “Although classified as a rare disease, myelodysplastic syndromes can significantly impact the lives of patients and their families. We’re here every day to help all MDS patients — whether newly diagnosed, like Ms. Roberts, or those who have been living with the disease for years. We provide the answers they need to learn about MDS, about how to advocate for their best care and treatment, and how to live the best life possible with a chronic disease like MDS.”

AA&MDSIF offers a range of support for MDS patients and their caregivers, including educational materials, community-based patient groups, online programs, a peer support network and conferences with leading medical experts.

AA&MDSIF also provides educational programs and resources for healthcare providers, including the Treating MDS Toolkit, and a mobile app for MDS risk classification.

About AA&MDSIF

The Aplastic Anemia & MDS International Foundation (AA&MDSIF) is the world’s leading nonprofit health organization dedicated to supporting patients and families living with aplastic anemia, myelodysplastic syndromes (MDS), paroxysmal nocturnal hemoglobinuria (PNH) and related bone marrow failure diseases. AA&MDSIF provides answers, support and hope to thousands of patients and their families around the world.

AA&MDSIF is in touch with a number of MDS patients who can share their MDS story with your news organization or publication. The AA&MDSIF Medical Advisory Board includes experts who can address all aspects of MDS and other bone marrow failure diseases.

To connect with patients or medical experts, please contact Benita Marcus at (301) 279-7202, ext. 102 or marcus@aamds.org.

SOURCE The Aplastic Anemia & MDS International Foundation


Source: PR Newswire