Hope and Destiny: The Patient's and Parent's Guide to Sickle Cell Disease and Sickle Cell Trait. Written by Allan F. Platt, Jr., P.A.-C and Alan Sacerdote, M.D. (2002). Published by Hilton Publishing Company; PO Box 737; Roscoe, IL 61073, (8150 885-1070. 237 pages. $16.95. www.hiltonpub.com

More than 70,000 Americans have sickle cell disease, which afflicts individuals of almost every ethnic background. Every year, approximately 1,000 babies are born with the disease and 3.5 million Americans carry the sickle cell trait, a modification of red blood platelets. Because the gene mutation appears in geographic areas where malaria occurs, the authors theorize it offers protection against severe malaria infection, thus Hope and Destiny: The Patient's and Parent's Guide to Sickle Cell Disease and Sickle Cell Trait has an universal audience. The paperbound book has a comforting two-toned green cover with a photograph of a smiling "mom and her two sons," inviting a reader to learn more about a difficult subject.

The book has seventeen chapters, two appendices, six tables, although the table of contents references only five, and a truncated bibliography. Each chapter is separated into short sections, many containing three to four paragraphs with technical explanations appearing first, followed by informal language in the subsequent paragraphs, which allows a lay person to skim over the technical areas. Medical terms are italicized and defined in general terms within the text. All tables contain detailed information such as a schedule of recommended sickle immunizations by age or the quantity of water a child weighing a certain amount needs to drink each day. The tables present information that may be useful in an emergency, and can be copied and carried with a patient or a caregiver.

Personal stories, medical terminology, and specific recommendations emphasize the seriousness of the disease and offer hope in dealing with it, yet the authors don't soften the disease's aspects. For example, on page 17 in the genetic counseling chapter, they write "There is no cure for sickle cell anemia today except bone marrow transplants. But a couple who wish to have children can know in advance whether their child will carry the sickle cell trait and/or actually have sickle cell disease. With that knowledge, they can face the hard question of whether or not to bring into the world a child likely to suffer with sickle cell disease."

After reading the beginning paragraph in the introduction, I understand, for the first time, how a misshapen red blood cell produces extreme pain and other physiological complications inherent to sickle cell disease. Chapters 1 through 7 explain the genetic modifications and the physical consequences caused by the disease. Chapter 5 lists six different kinds of hemoglobin followed by sections discussing the genetic aberrations affecting different ethnic groups. Chapters 8 through 13 trace the development of the disease from six-months old through advanced adulthood. The last four chapters address pain, new treatments, individual empowerment and resources.

Co-author Alan Platt, Jr., PA-C, is the program coordinator and a physician assistant at the Georgia Comprehensive Sickle Cell Center at the Grady Health System in Atlanta, Ga. He has published many articles about sickle cell disease. His empathy for those afflicted with the disorder is evident throughout the book, although his warnings to parents of children with the trait are direct and frank. The book's other author, Dr. Alan Sacerdote is chief of adult endocrinology at the Woodhull Medical and Mental Health Center and clinical professor of medicine at SUNY Health Science Center in Brooklyn, New York.

The book contains sections on financing health care, including directions on dealing with Medicare and insurance companies. Another complex subject addressed in this book and not seen in most medical self-help books is spirituality. The authors have observed patients with a spiritual foundation survive longer and cope better.

As a chronic pain sufferer, I appreciate the realistic assessment of the pain caused by the disease, the exposure of fallacious myths regarding long-term usage of opioids, and the reaffirmation of the low rate of addiction experienced by chronic pain sufferers. The Georgia Comprehensive Sickle Cell Center studied 2,400 sickle cell patients and found only 5% of the 2,400 became addicted, a statistic confirmed by other studies of long-term opioid usage for non-malignant chronic pain.

Hope and Destiny: The Patient's and Parent's Guide to Sickle Cell Disease and Sickle Cell Trait covers an extensive array of topics and explains them in comprehensible terms, yet offers more complex information in tables and the glossary. Wide margins between paragraphs and the text allow for "white space" that softens the complex nature of the topic. The paper binding is flexible enough to lie flat on a photocopier, a good feature since many of the topics are appropriate for teachers, day-care providers, and other caregivers.

I found that one feature of the book distracted me. The book is illustrated with line drawings of people with pronounced lips, an obvious racial stereotyping, and portrays no other races, even though the authors say the mutated gene affects all ethnic groups. Why not show a variety of nationalities instead of using one physical characteristic to depict a single group of people? This is too good of a book to be diminished by careless illustrations.

Before reading this book, I wondered if a non-black person could or even should review a book about sickle cell disease; however, my doubts disappeared with minutes of opening the book. Not only does the sickle cell gene appear in all humans, the disease is so painful and so devastating that everyone needs to know more about it. Also, after three knee operations, I've learned pain unites all those who suffer from it.

Hope and Destiny: The Patient's and Parent's Guide to Sickle Cell Disease and Sickle Cell Trait is an important guide for dealing with a horrific disease.