Disease-specific Patient Guides
AA&MDSIF patient guides are complete print resources, written and reviewed by recognized medical professionals who are experts in bone marrow failure disease.
Your Guide to Understanding Aplastic Anemia
This essential primer for patients and families on aplastic anemia covers causes, symptoms, classifications, treatments, and much more. With easy-to-read text and charts, and section review content, newly diagnosed patients and any needing to know more about aplastic anemia should request this free AA&MDSIF patient guide.(Download a pdf)
Your Guide to Understanding MDS (Myelodysplastic Syndromes)
This patient guide on myelodysplastic syndromes (MDS) begins with blood basics, MDS classifications, and then specifics on symptoms, tests, actively managing your MDS-related healthcare, and treatment options. As a highly variable disease, learn about all types of MDS with Your Guide to Understanding MDS. (Download a pdf)
What to Expect from Treatment: A Guide to Understanding FDA-Approved Drug Therapies for MDS (Myelodysplastic Syndromes)
As a partner to Your Guide to Understanding MDS, this patient guide details what patients need to know about treatments using the 3 FDA-approved drugs for MDS – azacitidine (Vidaza®), decitabine (Dacogen®) and lenalidomide (Revlimid®). Read about how what to know before starting treatment, how each treatment works, MDS classifications, and how to get the help you need while undergoing treatment.
Your Guide to Understanding PNH (Paroxysmal Nocturnal Hemoglobinuria)
Get the facts and information you need on paroxysmal nocturnal hemoglobinuria (PNH) in this patient guide. Learn about the several types of PNH blood cells, treatments, how to take an active role in your care, and tips for living well with PNH.
General Topic Patient Guides
Living Well with Bone Marrow Failure Disease
For all patients, families, and caregivers, this complete guide presents practical guidance and tips on how to make the most of life while living with bone marrow failure disease. Featuring stories and quotes from actual patients, sections cover coping emotionally with a diagnosis, how to find personal support and treatment professionals, making the most of office visits, how to take care of yourself, and manage stress.
Standing Up for Your Health
The AA&MDSIF Standing Up for Your Health program is described in detail in this 48 page patient guide. Based on five distinct program areas, patients learn how to build a healthcare and personal support team, learn about disease and treatment options, and keep careful track of your health-related information. AA&MDSIF recommends that newly diagnosed and long-term patients learn how to stand up for their health by becoming familiar with and making use of the contents of this newest patient guide.
AA&MDSIF Fact Sheets
Single or two sheet sources of information on diverse subjects all related to bone marrow failure disease:
- Bone Marrow and Stem Cell Transplantation: The basics of transplantation options, donor matching, decision making, and additional sources of information for patients are contained in this brief summation.
- Understanding Clinical Trials: Presenting succinct summaries of clinical trials – what they are, how they are conducted, reasons for participating, possible risks, and how to find and apply for selection, this fact sheet lets readers learn the basics and where to find additional sources of information and assistance.
- Iron Overload in Patients With Bone Marrow Failure Disease: Resulting from successive red blood cell transfusions that some patients may receive, excess iron in the blood (iron overload) can result. Causes, symptoms, tests, and treatments (iron chelation therapy, and phlebotomy) are reviewed in this fact sheet that all patients receiving red blood cell transfusions should read.
- How to Evaluate Health Information on the Internet: With the proliferation of Web sites and possible misleading, incorrect or fraudulent information that may be contained in some, 7 evaluation questions are presented with answers to help patients and families make informed decisions about which sites are trustworthy, and to know the warning signs for sites to avoid. Established government sites are shown on the reverse side.
- Online Learning Center: This important section of AAMDS.org is described as to content and organization.