CAF Posts New “Guide to Living with Thalassemia” for Download
September 27, 2013 – CAF is pleased to make available to the thalassemia community an important new publication, A Guide to Living with Thalassemia, which can be downloaded by clicking here. (Please note that this document is 115 pages and may take some time to download.)
A Guide to Living with Thalassemia is designed to provide important and useful information to individuals in the thalassemia community throughout their lives. The book is intended for both patients and caregivers and focuses on the following chapter topics:
- Managing Thalassemia: Transfusions
- Managing Thalassemia: Iron Chelation
- Assembling Your Health Care Team
- Complications (Cardiac, Liver, Endocrine)
- Healthy Living
- Thoughts, Feelings & Behavior
- Advice for Parents and Caregivers
- Curative Approaches
- Finances and Insurance
- Clinical Trials
- Advocacy
Written by Katie Baer, MPH and edited by Gina Cioffi, Esq. and Craig Butler, A Guide to Living with Thalassemia is an invaluable aid that all those affected by thalassemia should download and reference.
CAF intends to update the Guide on a regular basis in order to keep it up-to-date with new advances in the field. These updates will be posted on the CAF website for easy access.
This informational resource was developed by CAF in collaboration with the Centers for Disease Control and Prevention. It was supported by Cooperative Agreement #3U27DD000331-05W1 from the Centers for Disease Control and Prevention. Its contents are solely the responsibility of the authors and do not necessarily represent the official views of the Centers for Disease Control and Prevention.