Published by the State of California, Department of Public Health (CDPH), Genetic Disease Screening Program (GDSP), Communication and Education Unit (Faith Raider, MA, MCHES, Chief)

Reviewed by parents and staff at the Sickle Cell Disease Foundation.

Special thanks to Susan Paulukonis, MA, MPH, and Jhaqueline Valle, MPH, Tracking California, Sickle Cell Data Collection Program.

Copyright © 2024

A Parent’​s Handbook for Sickle Cell Disease, Part 1

Editors: Shellye Lessing, MS; Elliot Vichinsky, MD, Children’s Hospital & Research Center, Oakland Sickle Cell Center, with Shelley Mann, MPH; Marna Copeland-Taylor, MPH; Joy DuVaul, MA: Education Programs Associates and Kathleen Velazquez, MPH; Sylvia Campbell, GPP: CDPH, GDSP

Authors: Ann Earles, RN, PNP, Coordinator, Clinical Studies; Marsha Gad, PhD, Psychologist; Deborah Hurst, MD, Associate Director, Sickle Cell Program; Klara Kleman, MT, MS, Supervisor, Hemoglobinopathy Laboratory; Shellye Lessing, MS, Genetic Counselor; Susan Fortune Pinheiro, MS, Genetic Counselor; Joseph Telfair, MSW, MPH, Social Worker; Elliott Vichinsky, MD, Director, Oakland Sickle Cell Center

Design & Illustration: Wendy Hoag; Susan Stasi & Jim Campbell

Acknowledgements: Ghallyah Roberts for preparation of the manuscript; Caroline Hastings, MD, for review of the manuscript and helpful additions; Barbara Gaffield, RD, for comments on nutrition; Kathleen Velazquez, MPH, MA, Chief, Newborn Screening Branch and Karen Whitney, MS, Health Program Specialist, CDPH, GDSP, for their review; and CDPH, GDSP, for funding handbook development and distribution.

Additional thanks to the following reviewers for their contributions: Myles B. Abbott, MD, East Bay Pediatrics; James Bowman, MD, University of Chicago; Tina Coleman, MPH, Los Angeles County/University of Southern California (LAC/USC) Medical Center; Pat Corley, RN, LAC/USC Medical Center; Kurt Fenolio, MS, UCSF; Peter Grams, MSW, Los Angeles Sickle Cell Disease Research Foundation; Paula Haddow, MAT, Corn Education Committee; Yvonne Harold, RN, LAC/USC Medical Center; Betty Jackson, PhD, Center for Health, Urban Education and Research; Alverna Jenkins, liSW, Cincinnati Comprehensive Sickle Cell Center; Leora Nash, Sickle Cell Organization of Inland Counties; Darlene Powers, MD, LAC/USC Medical Center; Clarice Reid, MD, Sickle Cell Disease Branch, National Institutes of Health (NIH); Jeanne Smith, MD, Harlem Hospital, Columbia University; June Vavasseur, MSW, Program Consultant, and Charles Whitten, MD, Wayne State University; and the following former GDSP staff: Linda Lustig, MS, Rhonda Shonberg, MS, and Sylvia Campbell, GPP.

Special thanks to the families of children with sickle cell disease who made suggestions during production of the book, modeled for the illustrations, and who were the inspiration for the project.

Copyright © 1990, CDPH, GDSP; Revised 1998; Revised 2008.

A Parent’s Handbook for Sickle Cell Disease, Part 2

Authors: ​Children’s Hospital Oakland (CHO) Sickle Cell Center

• Ann Earles, RN, PNP, Coordinator, Clinical Studies
• Marsha Treadwell, PhD, Psychologist
• Deborah Hurst, MD, Associate Director
• Susan Fortune Pinheiro, MS, Genetic Counselor
• Shellye Lessing, MS, Genetic Counselor
• Joseph Telfair, DrPH, MSW, MPH, Social Worker
• Fran Merriweather, MSW, Social Worker
• Elliot Vichinsky, MD, Director

Education Program Associates: ​Shelley Mann, MPH; Susan Karlins, MPH; Donna Bell Sanders, MPH; and Joy DuVaul, MA, CHES

CDHS, GDB: ​Karen Whitney, MS; Kathleen Velazquez, MPH, MA; George C. Cunningham, MD, MPH, Chief

Illustration: Sue Parkinson

Design: Susan Stasi

Printing: 2004 version: Kaye-Smith

Developed and printed with funding from CDHS, GDB, and the Maternal and Child Health Program, Health Resources and Services Administration, Department of Health & Human Services, from a grant through the California Public Health Foundation.

Acknowledgements: ​​We would like to thank the staff at CHO Sickle Cell Center for their time and effort. Ann Earles, RN, PNP, Coordinator for Clinical Studies; Marsha Treadwell, PhD, Psychologist; Debornah Hurst, MD, Associate Director; Susan Fortune Pinheiro, MS, Genetic Counselor; Shellye Lessing, MS, Genetic Counselor; Joseph Telfair, DrPH, MSW, MPH, Social Worker; Fran Merriweather, MSW, Social Worker; and Elliot Vichinsky, MD, Director.

We would also like to thank the following reviewers for their contributions: Junious G. Adams II, PhD, Sickle Cell Disease Branch, NIH; James Bowman, MD, Department of Pathology, University of Chicago; Pat Corley, RN, LAC/USC Sickle Cell Center; Janet Fithian, Children’s Hospital of Philadelphia; Peter Grams, MSW, Sickle Cell Disease Research Foundation; Ekua Hackney, MS, PNP, Children’s Hospital—Oakland; Paula K. Haddow, MAT, Foundation for Blood Research; Yvonne Harold, RN, LAC/USC Sickle Cell Center; Shellye Lessing, MS, San Francisco General Hospital; Clarice Reid, MD, Sickle Cell Disease Branch, NIH; Elaine Smith, MD, Kaiser Permanente of Southern California; Jeanne Smith, MD, Harlem Hospital Comprehensive Sickle Cell Center; Joseph Telfair, DrPH, MSW, MPH, Department of Maternal and Child Health, University of North Carolina at Chapel Hill; and June Vavasseur, MPH, Program Consultant.

Additional thanks to the parents who reviewed this handbook: Vera Vercher, Debra Williams, Gloria Arceneaux, Diedra Lintz, Elaine Anderson, and Alice Ector.

Special thanks to Renee Hammer for all her assistance in this project, and to Glenda Butler, John Sanders, and Steve Tiger for their assistance in preparing the photographs for the illustrations, as well as to the children who modeled for these illustrations.

Also, thanks to the GDB, CDHS staff for their assistance, particularly Karen Whitney, MS, Genetic Disease Program Specialist, Kathleen Velazquez, MPH, MA, Chief, Newborn Screening Section, M. Eileen McElroy, RNC, MSN, Nurse Consultant, Linda Lustig, MS, Chief, Prenatal Genetic Services Section, and Sylvia Campbell, GPP, Genetic Disease Program Specialist.

Addendum: ​We would like to thank all those involved in the revision and updating of the Parent’s Handbook for Sickle Cell Disease, Part 2. Many of these individuals also worked on the original handbook. Children’s Hospital & Research Center at Oakland staff: Marsha Treadwell, PhD, Keith Quirolo, MD, Lori Appel Styles, MD, and all other members of the sickle cell staff that contributed their valuable comments and knowledge. GDB Staff: Kathleen Velazquez, MPH, MA, Norah Ojeda, Karen Whitney, MS, Irene Mandujano, and Shellye Lessing, MS.

It took everyone’s hard work, dedication, and commitment to the project to make it a reality.

George C. Cunningham, MD, MPH, Chief, GDB, CDHS

Copyright © 1993, State of California, Department of Health Services (CDHS), Genetic Disease Branch (GDB), Revised 1994, Revised August 2004.​