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.
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