Home         Forums  

Go Back   Marrowforums > Bone Marrow Failure Diseases > News and Events
Register FAQ Search Today's Posts Mark Forums Read

News and Events News related to bone marrow failure diseases

Reply
 
Thread Tools Search this Thread
  #1  
Old Thu Apr 25, 2013, 12:33 AM
Marrowforums Marrowforums is offline
Marrowforums.org
 
Join Date: Jul 2006
Posts: 861
Building Blocks of Hope: New Patient Information Handbook

Building Blocks of Hope is a new patient information handbook from the MDS Foundation.

You can access it interactively over the web at buildingblocksofhope.com or download a copy 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:
  1. Understanding MDS: about the diseases, causes, how bone marrow works or fails, MDS symptoms, bone marrow biopsies, cytogenetics, and MDS classification and severity

  2. Seeking Treatment: preparations for a doctor visit, treatment principles, transfusions, growth factors, other drugs, palliative care, transplants, clinical trials, and MDS in children

  3. Quick Tips: low counts, fever, tracking counts, disease effects, treatment side effects, anxiety and depression, and when to call the doctor

  4. Iron Overload: transfusions, iron overload severity, treatment, chelating agents, avoidance, glossary, resources, and a patient testimonial

  5. My MDS Plan: forms to track your treatment and health, frequently asked questions, references, staying well, insurance resources, contacting legislators, and patient testimonials

  6. The MDS Foundation: general information, staff, Board of Directors, Nurse Leadership Board, Centers of Excellence, resources, Foundation services, support groups, planned giving
Reply With Quote
  #2  
Old Fri Apr 26, 2013, 10:21 AM
Glenda H Glenda H is offline
Member
 
Join Date: Feb 2013
Location: Rockhampton Queensland Australia
Posts: 48
I have just downloaded the PDF file. It should be very useful.
Reply With Quote
  #3  
Old Fri Apr 26, 2013, 03:34 PM
Birgitta-A Birgitta-A is offline
Member
 
Join Date: Oct 2007
Location: Stockholm, Sweden
Posts: 1,918
Thumbs up Building Blocks of Hope

Hi Neil,
Very good info! I couldn't find any info about that all infections can decrease all counts otherwise the book is excellent.
Kind regards
Birgitta-A
Reply With Quote
Reply


Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

vB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Forum Jump

Similar Threads
Thread Thread Starter Forum Replies Last Post
One-day Patient and Family Forum in Washington, DC, May 2, 2015 Marrowforums News and Events 0 Fri Apr 24, 2015 08:27 PM
One-day Patient and Family Forum in Pittsburgh, Pennsylvania, April 18, 2015 Marrowforums News and Events 0 Mon Apr 6, 2015 05:50 PM
One-day Patient and Family Forum in Hackensack, New Jersey, June 27, 2015 Marrowforums News and Events 0 Mon Apr 6, 2015 05:50 PM
One-day Patient and Family Forum in Nashville, Tennessee, March 14, 2015 Marrowforums News and Events 0 Fri Feb 13, 2015 06:15 PM


All times are GMT -4. The time now is 12:17 PM.


Powered by vBulletin® Version 3.6.7
Copyright ©2000 - 2018, Jelsoft Enterprises Ltd.
Forum sites may contain non-authoritative and unverified information.
Medical decisions should be made in consultation with qualified medical professionals.
Site contents exclusive of member posts Copyright 2006-2018 Marrowforums.org