Marrowforums
Wed Apr 24, 2013, 11:33 PM
Building Blocks of Hope is a new patient information handbook from the MDS Foundation (http://www.mds-foundation.org).
You can access it interactively over the web at buildingblocksofhope.com (http://buildingblocksofhope.com) or download a copy (http://www.mds-foundation.org/bboh/) as a PDF file. We recommend skimming it to become familiar with the type of information that's available, then keeping it for reference and for more careful reading of the sections applicable to you.
The 140-page handbook is highly detailed but written for patients and caregivers. It is currently available in English, and the MDS Foundation promises versions in Danish, French, German, and Spanish.
The Building Blocks of Hope handbook, subtitled Strategies for Patients & Caregivers LIVING with MDS, has 6 sections:
Understanding MDS: about the diseases, causes, how bone marrow works or fails, MDS symptoms, bone marrow biopsies, cytogenetics, and MDS classification and severity
Seeking Treatment: preparations for a doctor visit, treatment principles, transfusions, growth factors, other drugs, palliative care, transplants, clinical trials, and MDS in children
Quick Tips: low counts, fever, tracking counts, disease effects, treatment side effects, anxiety and depression, and when to call the doctor
Iron Overload: transfusions, iron overload severity, treatment, chelating agents, avoidance, glossary, resources, and a patient testimonial
My MDS Plan: forms to track your treatment and health, frequently asked questions, references, staying well, insurance resources, contacting legislators, and patient testimonials
The MDS Foundation: general information, staff, Board of Directors, Nurse Leadership Board, Centers of Excellence, resources, Foundation services, support groups, planned giving
You can access it interactively over the web at buildingblocksofhope.com (http://buildingblocksofhope.com) or download a copy (http://www.mds-foundation.org/bboh/) as a PDF file. We recommend skimming it to become familiar with the type of information that's available, then keeping it for reference and for more careful reading of the sections applicable to you.
The 140-page handbook is highly detailed but written for patients and caregivers. It is currently available in English, and the MDS Foundation promises versions in Danish, French, German, and Spanish.
The Building Blocks of Hope handbook, subtitled Strategies for Patients & Caregivers LIVING with MDS, has 6 sections:
Understanding MDS: about the diseases, causes, how bone marrow works or fails, MDS symptoms, bone marrow biopsies, cytogenetics, and MDS classification and severity
Seeking Treatment: preparations for a doctor visit, treatment principles, transfusions, growth factors, other drugs, palliative care, transplants, clinical trials, and MDS in children
Quick Tips: low counts, fever, tracking counts, disease effects, treatment side effects, anxiety and depression, and when to call the doctor
Iron Overload: transfusions, iron overload severity, treatment, chelating agents, avoidance, glossary, resources, and a patient testimonial
My MDS Plan: forms to track your treatment and health, frequently asked questions, references, staying well, insurance resources, contacting legislators, and patient testimonials
The MDS Foundation: general information, staff, Board of Directors, Nurse Leadership Board, Centers of Excellence, resources, Foundation services, support groups, planned giving