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What are the complications of Sickle Cell Disease?

By calovel On November 14, 2015 · Add Comment · In Patients & Families, Patients and Families - Featured Resources, Patients and Families - Medical Information
What are the possible complications of sickle cell disease, and what can be done to help these complications?
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About Sickle Cell Disease

By calovel On November 11, 2015 · Add Comment · In Blood Banks & Donors, Patients & Families, Patients and Families - Medical Information, Teachers & Students, Teachers and Students - General Information
A list of frequently asked questions concerning basic information about sickle cell disease.  Includes a printable fact sheet.
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Stepping Up to Adult Care

By calovel On November 6, 2015 · Add Comment · In Patients & Families, Patients and Families - Children, Patients and Families - Featured Resources
This guide will assist programs in developing and establishing a transition program from pediatric to adult care for youth with chronic medical conditions.
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Camps for Children with Sickle Cell

By calovel On November 6, 2015 · Add Comment · In Patients & Families, Patients and Families - Children
Camps are listed by state and age group.
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Living With Sickle Cell Disease: The Struggle to Survive

By calovel On November 4, 2015 · Add Comment · In Patients & Families, Patients and Families - Books, Stories, Art, and Music - Books, Literature, and Reading
Authors: Judy Gray Johnson and Leroy Williams Jr. Living with Sickle Cell Disease: The Struggle to Survive is a story of Judy Gray Johnson's perseverance in the face of living with a little-understood chronic illness.
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How My Daughter Is a Survivor of Sickle Cell Disease

By calovel On November 4, 2015 · Add Comment · In Patients & Families, Patients and Families - Books, Stories, Art, and Music - Books, Literature, and Reading
Author: Adrienne F. Easter
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I Only Cry At Night

By calovel On November 4, 2015 · Add Comment · In Patients & Families, Patients and Families - Books, Patients and Families - Featured Resources, Stories, Art, and Music - Books, Literature, and Reading, Stories, Art, and Music - Featured Resources
Author: P. Allen Jones This is a personal story about overcoming many obstacles including sickle cell disease. P. Allen struggled out of poverty to a federal executive career despite living in pain. This book is an inspiration to anyone, especially those suffering with sickle cell disease.
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Resilience: A Personal Story of Coping with the Ravages of Sickle Cell Disease… Against All Odds

By calovel On November 4, 2015 · Add Comment · In Patients & Families, Patients and Families - Books, Stories, Art, and Music - Books, Literature, and Reading, Stories, Art, and Music - Featured Resources
Author: Judy Johnson This book strengthens the resolve for those suffering from sickle cell disease in particular and anyone that may have a disability. This should be recommended reading for parents, educators, and anyone in the workplace who supervise those who may be classified as disabled.
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Hope & Destiny Jr.: The Adolescent’s Guide to Sickle Cell Disease

By calovel On November 4, 2015 · Add Comment · In Patients & Families, Patients and Families - Books
Authors: Lewis L. Hsu M.D., Ph.D., Carmen C. M. Rodrigues RN, Silvia R. Brandalise M.D., Angela Vennemann, and Tifani Carter Currently in its 3rd edition, Hope & Destiny offers the latest information on scientific research, preventing complications and treatment for sickle cell disease in an easy-to-read adult format.
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Hope and Destiny

By calovel On November 4, 2015 · Add Comment · In Patients & Families, Patients and Families - Books
Authors:Alan Sacerdote M.D., Allen Platt, Allan F. Platt Jr. P.A.-C. M.M.Sc., M D Sacerdote An up-to-date, informative, and personal discussion of sickle-cell anemia, this guide provides information on medically proven methods of treatment along with patient vignettes. Written primarily for African Americans, who comprise the majority of the victims of sickle-cell anemia, this handbook examines the complex issues that surround this genetic disease.
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English and Spanish Handouts for Families and Schools

By calovel On November 4, 2015 · Add Comment · In Patients & Families, Patients and Families - Multilingual Guides, Teachers & Students, Teachers and Students - Handouts and Handbooks, Teachers and Students - Multilingual Resources
From the New England Pediatric Sickle Cell Consortium
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Bobby Blood Cell – A coloring book adventure in preventing sickle cell problems

By calovel On November 4, 2015 · Add Comment · In Patients & Families, Patients and Families - Children
By Donna Dent
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Keisha’s Transfusions and Desferal™ Therapy – An Educational Coloring Book for Children with Sickle Cell Disease

By calovel On November 4, 2015 · Add Comment · In Patients & Families, Patients and Families - Children
By Donna Dent and Beatrice Gee, MD
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Fast Facts on Hemoglobin Variants

By calovel On November 4, 2015 · Add Comment · In Patients & Families, Patients and Families - Medical Information
Fact sheets on various hemiglobin variants.
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A Parents’ Handbook for Sickle Cell Disease

By calovel On November 4, 2015 · Add Comment · In Patients & Families, Patients and Families - Children, Patients and Families - Featured Resources, Patients and Families - Medical Information
From The Virginia Sickle Cell Awareness Program
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A Counseling Handbook for Sickle Cell and Other Hemoglobinopathies

By calovel On November 4, 2015 · Add Comment · In Patients & Families, Patients and Families - Medical Information, Teachers & Students, Teachers and Students - Featured Resources, Teachers and Students - Handouts and Handbooks
A complete guide for counseling and education for the most common hemoglobin variants identified through Virginia’s sickle cell screening program.
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Sickle Cell Trait (SCT) and Athletics

By calovel On July 28, 2015 · Add Comment · In Patients & Families, Patients and Families - Medical Information, Teachers & Students, Teachers and Students - Featured Resources, Teachers and Students - General Information
Exercise and athletic activity are important parts of a healthy life style.  Sickle cell trait should not stop anyone from participating fully in athletics.  This page provides resources and information about athletic activity for those with sickle cell.
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Template for Patient & Family Needs Assessment

By calovel On July 28, 2015 · Add Comment · In Healthcare Providers, Healthcare Providers - Medical Resources and Information, Patients & Families, Patients and Families - Medical Information
This form is designed to help facilitate understanding of the family's circumstances, knowledge of sickle cell disease, and satisfaction with health care and to identify patient and family concerns and potential barriers to appropriate treatment. It should be completed by the family when the child is not ill (e.g. in the waiting room prior to a clinic visit) and subsequently reviewed with the family by a health care provider.
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Portuguese Sickle Cell Guide for Patients from Brazil

By calovel On July 28, 2015 · Add Comment · In Patients & Families, Patients and Families - Multilingual Guides
Portuguese Guidebook about Sickle Cell Disease for Patients By Dr.Heloisa Helena Arantes Gallo da Rocha, a Hematologist in Brazil
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The Child with Sickle Cell Disease: A Teaching Manual

By calovel On February 24, 2015 · Add Comment · In Patients & Families, Patients and Families - Children, Teachers & Students, Teachers and Students - Featured Resources, Teachers and Students - Handouts and Handbooks
Written and Developed by Debra A. Vedro, MSN, RN, CPNP And Rebecca A. Morrison, MSN, RN, CPNP at the Children's Medical Center of Dallas, Dallas, Texas.
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About this Site

This site is a collaboration between members of the Emory Center for Digital Scholarship, the Aflac Cancer and Blood Disorders Center of Children's Healthcare of Atlanta, the Emory School of Medicine, and the Comprehensive Sickle Cell Center at Grady Health System, Atlanta, Georgia. The Editorial Board of the Sickle Cell Information Center manages content of the site, but is not responsible for any inaccuracies in content or links provided. In no way will the participating entities, the Editorial Board, our contributors, or any participants be held responsible for any problems that might occur, or any damage or loss sustained due to the use of information (or inadequate or incomplete information) that may be contained on the site.

 

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