Emory
Physicians Contribute to New Book on Sickle Cell Disease
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. And while few treatments are
available for individuals with sickle cell, many with the disease who
receive good health care lead productive lives and live into their mid-forties
and beyond.
Despite these facts, many
affected by sickle cell disease either personally or through their
children are not aware of their full range of options in coping with
the disease. 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. The book, due
to be released in early October, is co-authored by Allan Platt, PA-C,
physician assistant and program coordinator at the Georgia Comprehensive
Sickle Cell Center at Grady Memorial Hospital and clinical instructor
at the Emory University School of Medicine's Physician Assistant Program.
It includes contributing medical information from Emory physicians Drs.
James Eckman, Lewis Hsu and Melanie Jacob, all of whom work at the Sickle
Cell Center.
"Hope and Destiny" is co-authored
by New York physician Alan Sacerdote, M.D., and 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 of the research and treatments, including research being done at
Emory, involve bone marrow transplants and the use of hydroxyurea, a
drug recently approved by the Food and Drug Administration to treat
adults with sickle cell disease. Other research studies that were conducted
in Atlanta, including highly refined fish oil to prevent pain crises
and trans-cranial doppler ultrasound (TCD) to detect children at risk
for strokes, are discussed in the book.
"This is truly a Sickle Cell
Center project," says Platt, who served as primary editor of the book.
"We really hope this book helps the general 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."
Melanie Jacob, M.D., assistant
professor of family medicine in the Department of Hematology and Oncology
at the Emory University School of Medicine, Winship Cancer Institute,
and assistant director at the Georgia Comprehensive 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," Dr. Jacob
says. "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" also features
several patient stories, as well as information on pain management and
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
have the trait, which does not result in the full-blown disease unless
two carriers have offspring who receive the trait from both their mother
and their father.
The Georgia Comprehensive
Sickle Cell Center is the largest combined adult and pediatric multidisciplinary
clinic in the state actively following over 1,500 patients. It is the
world's first 24-hour primary care clinic for patients with sickle cell
syndromes, and receives over $1.5 million annually in state and federal
grant funds.
For more information on sickle
cell disease, visit http://www.SCInfo.org.
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