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| Topic: |
Hematologic Diseases (HE) |
| Title: |
Managing Treatment Decisions for Bone Marrow Failure Disease: Aplastic Anemia, Myelodysplastic Syndromes, Paroxysmal Nocturnal Hemoglobinuria. |
| Author: |
n/a |
| Source: |
Annapolis, MD: Aplastic Anemia and MDS International Foundation, Inc. 2005. 11 p. |
| Availability: |
Available from Aplastic Anemia and MDS International Foundation, Inc. PO Box 613, Annapolis, MD 21404. Phone: 1-800-747-2820. Email: help@aamds.org. Website: www.aamds.org. Price: Single copy free, $5.00 each additional copy. |
| Abstract: |
Aplastic anemia is a rare, non-contagious and often life-threatening disorder that results from the unexplained failure of the bone marrow to produce blood cells. MDS is a bone marrow failure disorder that is similar to aplastic anemia. This booklet provides information for people recently diagnosed with bone marrow diseases, such as aplastic anemia, paroxysmal nocturnal hemoglobinuria (PNH), or myelodysplastic syndromes (MDS), and helps them make important treatment decisions. Topics include managing the disease, finding an expert, the importance of communicating successfully with one’s health care provider (including discussing any conflicts with the medical team), informed consent, considering participation in clinical trials, supplements (such as vitamins or special diets) from sources other than the primary health care provider, the importance of recordkeeping, the role of patient education, and talking to other patients. The booklet includes a list of 16 suggested questions to ask the health care provider about any recommended treatment. Blank space is also provided for patients to record any other questions they may want to remember. The back cover of the booklet describes the goals and activities of the Aplastic Anemia and MDS International Foundation, an organization that fights bone marrow diseases through patient support and research. |
| Format: |
Brochure/Pamphlet |
| Language: |
English. |
| Major Keywords: |
Hematologic Diseases. Bone Marrow Diseases. Patient Care Management. Therapy. Decision Making. Patient Care Team. Delivery of Health Care. |
| Minor Keywords: |
Professional-Patient Relations. Aplastic Anemia. Myelodysplastic Syndromes. Patient Education. Voluntary Organizations. Recordkeeping. Support Groups. Clinical Trials. Communication. |
| Publication Number: |
HEBR10010. |
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