C.B. McIntosh Pediatric Sickle Cell Program
The UF Health C.B. McIntosh Pediatric Sickle Cell Program began in 1984, funded
in part by the Florida Department of Health and various grants. It is the only one
in the five-county area surrounding Jacksonville.
A team of specialists comprised of University of Florida faculty physicians, Nemours
Children’s Clinic physicians and a skilled staff of UF Health Jacksonville nurses
provides a broad range of services to children and their families, from genetic
counseling and medical management, to education and emotional support. The program
offers psychological counseling and a pediatric neuropsychological support program.
A part-time tutor is available for children who miss school because of sickle-cell-related
episodes. Particular emphasis is placed on empowering teens to take control of their
lives and their health as they enter adulthood.
Although the program moved to Nemours Children’s Clinic in 2009, many services are
still provided through the
UF Health C.B. McIntosh Pediatric Sickle Cell Center, including:
- Trait testing/counseling, newborn screenings, hemoglobin counseling
- Community education to schools, hospitals, health departments, day cares and churches
- Annual re-evaluations and psychological testing
- Children’s Medical Services (CMS) on-site enrollment
- Inpatient hospital visitation
- Tutorial services
- Camp Boggy Creek (for children with serious illnesses)
- Support groups
- Social worker to identify social issues for work or school
The center creates a single location for the treatment of sickle cell. Before opening
in 2003, patients were scattered throughout separate divisions of the hospital or
clinics. One clinic with a multidisciplinary staff has led to better treatment,
education and retention of patients. Teens and young adults in the program can now
articulate the definition of sickle cell disease, how it affects their lives, pain
management methods, medications, etc. Patients and their families gain confidence
that they can succeed against all odds.
In 2006, the Lucy B. Gooding Charitable Foundation Trust gave the program a $1.1
million gift over a five-year period to help fund neuropsychological testing for
pediatric patients, as well as the adolescent-adult transition program and a pediatric
neuropsychological support program.
Helping teens and young adults understand the importance of finding a medical home
and taking control of their health care is critical to living a longer, healthier
life. Engaging these young people in taking responsibility for bimonthly support
groups (establishing agendas, plans, goals and events for the year) makes them more
likely to stay involved and reach out to younger children. It is also important
to get parents and other family members involved in support groups and to stress
the importance of meeting a child’s academic needs.
The program is funded by a grant from the Lucy B. Gooding Charitable Foundation
Trust, the state of Florida and through an in-kind donation from UF Health Jacksonville.
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