Myelodysplastic Syndromes (MDS) are challenging for both health care providers and patients to understand and explain. It can be overwhelming to be faced with the diagnosis of a rare disease like MDS, so it’s important to have clear descriptions of the disease information you need wherever you are in your MDS journey.
The resources in this toolkit will help you learn more about all aspects of MDS and manage your health care. There are printable patient information pages about disease basics, your MDS risk level, treatment options, managing side effects, and preparing for your medical appointments.
In addition there are printable forms you can use to keep track of your treatment information and medical care – these include a symptom tracker, a medical appointment record, a blood transfusion record, and a chart for your health care team.
There are also short videos about MDS and links to many other AAMDSIF resources like webinars, booklets and fact sheets, a Map of Specialists and other informative content.
If you are a patient, you can select which of the MDS toolkit resources are most useful for you as well as for your caregivers and loved ones. You can also order a 3-ring binder that includes all of the patient information pages, disease management tools and AAMDSIF booklets and fact sheets related to MDS.
If you are a health care provider, you can print out the information sheets and share the other toolkit resources you think would be best for your MDS patients based on their diagnosis and where they are in their treatment journey. You can also order a “starter kit” in an expandable file folder that includes multiple copies of all patient information pages, disease management tools and AAMDSIF booklets and fact sheets related to MDS.
Downloadable pages about disease basics, MDS risk level, treatment options, side effect management and communicating with your health care team.
What is MDS
Basic description of MDS and how it affects your bone marrow and blood
Knowing Your MDS Risk Level
Explanation of how and why your MDS risk level determines your treatment options
Understanding the Symptoms of MDS
Review of the range of MDS symptoms based on low blood counts
Treatment for Lower Risk MDS
Summary of active surveillance and supportive care MDS treatment options
Treatment for Higher Risk MDS
Summary of FDA-approved medicines for treating high risk MDS and transplantation options
Managing Side Effects of MDS Therapy
Summary of the common side effects of MDS treatments and tips for managing them
Preparing for Medical Visits
Guidelines and suggested questions for making the most of your health care appointments
Staying on Therapy
Guidelines for managing your MDS treatment plan with your health care team
Forms you can use to keep track of your treatment information and medical care.
Form to record health care visits and notes
Form to record symptoms or reactions to treatment and medications that can be shared with health care providers
My Health Care Team
Chart to record medical professionals, pharmacy contacts, patient support organizations and others involved with your health care
Blood Transfusion Record
Form to keep track of blood transfusions as part of MDS treatment
Platelet Transfusion Record
Form to keep track of platelet transfusions as part of MDS treatment
This 3-ring binder includes all MDS Toolkit patient information pages and disease management tools along with related AAMDSIF publications. Patients can add their own content, such as medical records, appointment notes, and helpful articles. Order the complete MDS Toolkit for Patients on our Request Educational Materials page »
This “starter kit” in an expandable file folder includes 10 copies of all patient information pages and disease management tools along with related AAMDSIF publications. Health care providers can share the Toolkit resources with patients as appropriate for their stage in their MDS journey. Order the complete MDS Toolkit for Health Care Providers on our Request Educational Materials page »
MDS Patient Guides and Fact Sheets
Free educational booklets and fact sheets which can be downloaded or ordered for mail delivery
MDS Disease Information
AAMDSIF website information includes MDS causes, symptoms, diagnosis, types and treatments.
AAMDSIF Webinars on MDS
Links to upcoming and on-demand webinars on MDS and related topics
Find a Specialist
Interactive world map for finding MDS specialists
Comprehensive list of resources for various types of support
NCCN Patient Guide for MDS
Patient-friendly translation of National Comprehensive Cancer Network Clinical Practice Guidelines featuring guidance for talking with physicians about living with MDS and treatment options along with a glossary of terms and medical illustrations.