The nation's first-ever meeting to
discuss the need for comprehensive care of adult sickle cell anemia
patients will be held in Cincinnati April 7Ð8.
The National Adult Sickle Cell Providers
Symposium, which will be attended by about 300 scientists and care
providers from around the country, is sponsored by UC and the Sickle
Cell Adult Provider Network.
Sickle cell disease, an inherited blood
disorder, affects about 72,000 Americans and one in 500 African
Americans. Characterized by episodes of pain, chronic anemia and severe
infections, it usually begins in early childhood and is as yet without
For about 35 years, symposium organizers
say, the emphasis of sickle cell care has been on children, through
federally funded Pediatric Comprehensive Sickle Cell Care Centers. The
centers have contributed to longevity and improved the lives of
thousands of children with sickle cell disease.
These children, however, are now aged 30
to 40 and older, says Zahida Yasin, MD, director of the Adult Sickle
Cell Program at UC, and there are few adult care centers to treat them.
"At this time in their lives these
patients not only face the continuing battle with sickle cell disease,
but also the additional health issues of middle age, such as heart
disease, diabetes and high blood pressure," Dr. Yasin says.
"These problems are not only frequently
prevalent, but also much more severe than in non-sickle patients," says
Dr. Yasin, who is program director for the symposium. "Depression and
other psychological conditions associated with chronic illness and lack
of support systems are rampant."
Compounding the problem is the fact that
many adult patients are poor, without families and often intermittently
homeless. They also frequently have had a lifelong need for
pain-killing drugs, which makes them susceptible to predators on the
"Today we don't have the resources to
provide comprehensive care for the majority of adult patients with
sickle cell disease in the United States," says Dr. Yasin. "We're
hoping this conference will go at least part of the way to increasing
awareness of the problem."
The April 7 sessions will be held at the
National Underground Railroad Freedom Center in downtown Cincinnati.
The April 8 program will be at the Northern Kentucky Convention Center.