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October 28, 2002

Physicians contribute to new book on sickle-cell

By Alicia Sands Lurry

Sickle-cell disease is one of the most common genetic disorders in the United States, affecting more than 70,000 people, including one out of 400 African Americans, with symptoms that include periodic pain episodes, stroke, increased infections, yellowing of the skin and eyes, and other complications requiring emergency medical intervention.

While few treatments are available for sickle-cell, good health care enables many with the disease to lead productive lives into their mid-40s and beyond. But many affected by sickle-cell disease, either personally or through their children, are not aware of their full range of options in coping with it.

A new book, Hope and Destiny: A Patient’s and Parent’s Guide to Sickle Cell Disease and Sickle Cell Trait (Hilton Publishing), hopes to enhance readers’ knowledge about the disease. Released earlier this month, the book is coauthored by Allan Platt, physician assistant and program coordinator at the Georgia Comprehensive Sickle Cell Center at Grady Hospital and clinical instructor at the School of Medicine’s Physician Assistant Program. The book includes contributing medical information from Emory physicians James Eckman, Lewis Hsu and Melanie Jacob, all of whom work at the Sickle Cell Center.

Hope and Destiny, which Platt coauthored with New York physician Alan Sacerdote, informs readers of the complex causes of sickle-cell disease; the most current treatment options; what genetic counseling is and why it is important to get it; developmental issues at six different age levels; pain assessment and pain management; how to lower the likelihood of pain crises; and new treatments and research.

Some research and treatments, including work being done at Emory, involve bone marrow transplants and the use of hydroxyurea, a drug recently approved by the U.S. Food and Drug Administration to treat adults with sickle-cell disease. Other research studies conducted in Atlanta, including highly refined fish oil to prevent pain crises and transcranial doppler ultrasound (TCD) to detect children at risk for strokes, are discussed.

“This is truly a Sickle Cell Center project,” said Platt, who served as primary editor of the book. “We really hope this book helps the public understand sickle-cell disease and helps families cope with this disease. We also hope it will raise awareness and show people that sickle-cell is an important health issue.”

Jacob, assistant professor of family medicine in hematology and oncology at the Winship Cancer Institute and assistant director of the Sickle Cell Center, also has high hopes
for the book.

“This book spells out hope and destiny for the average person with sickle-cell disease,” Jacob said. “For the longest time, it has always been a case of lost hope for patients with this disease. But as awareness of sickle-cell is developed, hope is enhanced, and our ultimate destiny is a universal cure.”

Hope and Destiny features several patient stories, as well as information on pain management and the sickle-cell trait, which affects one out of 10 African Americans in the United States. It is estimated that more than 2.5 million Americans carry the trait, which does not result in the full-blown disease unless a child inherits the trait from two carrier parents.

The Georgia Comprehensive Sickle Cell Center is the largest combined adult and pediatric multidisciplinary clinic in the state, actively following more than 1,500 patients. It is the world’s first 24-hour primary care clinic for patients with sickle-cell syndromes, receiving more than $1.5 million annually in state and federal grant funds.