Stepping Up to Adult Care
This guide will assist programs in developing and establishing a transition program from pediatric to adult care for youth with chronic medical conditions.
Camps for Children with Sickle Cell
Camps are listed by state and age group.
Living With Sickle Cell Disease: The Struggle to Survive
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.
How My Daughter Is a Survivor of Sickle Cell Disease
Author: Adrienne F. Easter
I Only Cry At Night
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.
Resilience: A Personal Story of Coping with the Ravages of Sickle Cell Disease… Against All Odds
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.
Hope & Destiny Jr.: The Adolescent’s Guide to Sickle Cell Disease
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.
Hope and Destiny
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.
Bobby Blood Cell – A coloring book adventure in preventing sickle cell problems
By Donna Dent
Keisha’s Transfusions and Desferal™ Therapy – An Educational Coloring Book for Children with Sickle Cell Disease
By Donna Dent and Beatrice Gee, MD
Fast Facts on Hemoglobin Variants
Fact sheets on various hemiglobin variants.
A Parents’ Handbook for Sickle Cell Disease
From The Virginia Sickle Cell Awareness Program
A Counseling Handbook for Sickle Cell and Other Hemoglobinopathies
A complete guide for counseling and education for the most common hemoglobin variants identified through Virginia’s sickle cell screening program.
Template for Patient & Family Needs Assessment
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.
Portuguese Sickle Cell Guide for Patients from Brazil
Portuguese Guidebook about Sickle Cell Disease for Patients
By Dr.Heloisa Helena Arantes Gallo da Rocha, a Hematologist in Brazil
The Child with Sickle Cell Disease: A Teaching Manual
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.