For Your Patients
Written in plain language style, these basic informational guides can help patients understand aplastic anemia aplastic anemia: (ay-PLASS-tik uh-NEE_mee-uh) A rare and serious condition in which the bone marrow fails to make enough blood cells - red blood cells, white blood cells, and platelets. The term aplastic is a Greek word meaning not to form. Anemia is a condition that happens when red blood cell count is low. Most… , paroxysmal nocturnal hemoglobinuria paroxysmal nocturnal hemoglobinuria: (par-uk-SIZ-muhl nok-TURN-uhl hee-muh-gloe-buh-NYOOR-ee-uh) A rare and serious blood disease that causes red blood cells to break apart. Paroxysmal means sudden and irregular. Nocturnal means at night. Hemoglobinuria means hemoglobin in the urine. Hemoglobin is the red part of red blood cells. A… and myelodysplastic syndromes myelodysplastic syndromes: (my-eh-lo-diss-PLASS-tik SIN-dromez) A group of disorders where the bone marrow does not work well, and the bone marrow cells fail to make enough healthy blood cells. Myelo refers to the bone marrow. Dysplastic means abnormal growth or development. People with MDS have low blood cell count for at… . A complete packet of materials includes:
- Your Guide to Understanding Aplastic Anemia
- Your Guide to Understanding Myelodysplastic Syndromes
- Your Guide to Understanding Paroxysmal Nocturnal Hemoglobinura
- Your Guide to Living Well With Bone Marrow Failure Bone Marrow Failure: A condition that occurs when the bone marrow stops making enough healthy blood cells. The most common of these rare diseases are aplastic anemia, myelodysplastic syndromes (MDS) and paroxysmal nocturnal hemoglobinuria (PNH). Bone marrow failure can be acquired (begin any time in life) or can be… Disease
- Your Guide to Understanding MDS Drug Therapies
- Understanding Clinical Trials Clinical Trials: Clinical research is at the heart of all medical advances, identifying new ways to prevent, detect or treat disease. If you have a bone marrow failure disease, you may want to consider taking part in a clinical trial, also called a research study. Understanding Clinical Trials Clinical… Fact Sheet
- Iron Overload Iron Overload: A condition that occurs when too much iron accumulates in the body. Bone marrow failure disease patients who need regular red blood cell transfusions are at risk for iron overload. Organ damage can occur if iron overload is not treated. Fact Sheet
- Bone Marrow Bone Marrow: The soft, spongy tissue inside most bones. Blood cells are formed in the bone marrow. and Stem Cell Transplantation
- AA&MDSIF Informational Brochure
- Financial Resources
- How to Evaluate Health Information on the Internet
- Online Learning Center Introduction
- Marrowforums: Hosted Online Discussions
- Supporting Students with Bone Marrow Failure Disease: A Guide for Parents and School Personnel.
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