Billy Garrett Jr. Chases Dream in the G League

On a frigid New York Friday evening in February in the Westchester County suburb of White Plains, former DePaul great Billy Garrett Jr. finds himself at peace warming up inside the Westchester County Center for the Westchester Knicks game against the Greensboro Swarm that night. His pre-game routine is not something out of the ordinary as he stretches and puts up some shots; but for all the blood, sweat and tears he has shed at Morgan Park High School and at DePaul, he values the precious opportunity that has been afforded to him in the NBA's G League. As a former Big East Freshman of the Year, a 1,000-point scorer and DePaul's all-time leader in made free throws, Garrett feels blessed for the chance to realize his dreams in the NBA's developmental league. Related story
Original published date
Original source title
oneSCDvoice
Original updated date

Ginna Priola, MD

Ginna Priola is a pediatric hematologist-oncologist in Asheville, North Carolina and is affiliated with Texas Children's Hospital. She received her medical degree from Eastern Virginia Medical School and has been in practice between 6-10 years. She completed her residency in pediatrics from Case Western Reserve University and her fellowship from University of North Carolina Hospitals. As a pediatric hematologist/oncologist, she partners with children and their families facing enormous challenges while battling childhood cancer, sickle cell disease and other benign blood disorders.   Representative publications: Cerebrospinal Fluid Proteomics in Children During Induction for Acute Lymphoblastic Leukemia: A Pilot Study. Online profile
Original published date
Original source title
oneSCDvoice
Original updated date

Carla Jones

Anyone affected by sickle cell disease knows it is not just patients who need care, families need it too. At Levine Children’s Hospital, families find powerful advocates like nurse navigator Carla Jones. Carla Jones helps ensure pediatric sickle cell patients stay on track with appointments, lab tests, medications, follow-ups and everything necessary to best manage their care. But Jones is also there to support parents who just learned that their newborn has been diagnosed with a serious, lifelong disease. She is the referral go-between who can relay clinical details from one specialist to another. She is also a gentle teacher to pediatric patients, explaining medical realities in terms they can understand. For example, she tells preschoolers how normal blood cells are squishy like water balloons, but that some of their cells are hard and shaped like bananas, which causes problems that need special care. Carla Jones describes her job as “amazing.” She says, “It’s especially gratifying to see parents realize that their children can lead normal lives and to see teens become empowered to take care of themselves. Online profile
Original published date
Original source title
oneSCDvoice
Original updated date

Integrated Psychology Support and Comprehensive Cognitive Evaluation Improves Access to Special Education Services for Children With Sickle Cell Disease

Background: Children with sickle cell disease (SCD) are at risk for cognitive deficits. Limited data describe whether comprehensive cognitive evaluation improves education resources and whether caregivers perceive the assessment as beneficial. We tested our two hypotheses: (a) an integrated comprehensive cognitive evaluation program in children with SCD results in increased special education services allocation; and (b) caregivers will value comprehensive cognitive evaluation services provided. Procedure: In a tertiary care medical facility, as part of quality improvement project, in a before-and-after evaluation between March 2011 and July 2014, we examined the impact of targeted comprehensive cognitive evaluation on change in special education services. We also evaluated the caregiver's perception regarding the utility of the provided services. Results: A total of 21% (42 of 196) students (median age 11 years, range 3-18) with SCD were referred for cognitive assessment due to overt stroke (n = 11), silent stroke (n = 14), or concerns about cognitive or academic functioning without evidence of strokes (n = 17). At baseline, 45.2% received special education services and after the comprehensive cognitive evaluation 86.7% received special education services (P < 0.001). Among 33 caregivers who completed the survey, 97% reported that the assessment was helpful and 60% indicated that assessment led to beneficial changes for their children at school. Conclusion: Education advocacy coupled with comprehensive cognitive assessment in students with SCD improved access to special education services, and caregivers uniformly endorse this service as having added value. Abstract source
Original published date
Original source title
oneSCDvoice
Original updated date

An Integrative Review of Factors That Influence Reproductive Decisions in Women With Sickle Cell Disease

Sickle cell disease is one of the most prevalent genetic diseases in the world. Improvements in care have enabled those affected to experience an improved quality of life, with many affected persons now reaching reproductive age. However, pregnancy poses significant risks for women with the disease and this may affect their reproductive decisions. We conducted an integrative review of the published relevant scientific evidence to ascertain the factors that may influence these women with their reproductive decisions. The electronic databases MEDLINE, CINAHL, and PsychInfo and relevant journals were searched for peer-reviewed papers published between 2005 and 2015. Of the 440 papers identified, six papers satisfied the inclusion criteria and were assessed for quality. Results were analysed and synthesised using a thematic approach to produce a narrative report of the findings. Two main themes were identified: factors influencing reproductive decision-making and experiences during pregnancy. Education regarding disease knowledge and genetic implications may improve participation into screening programmes, facilitate the effective treatment needed to create trust in healthcare services, and promote better self-management. Educating professionals involved in family planning will facilitate women with this condition to make informed decisions regarding pregnancy. However, further research is required to explore the understanding of the risks involved with sickle cell disease, the best methods to educate people with sickle cell disease, and the influence that partners and families may have on women's reproductive decisions. Abstract source Full text
Original published date
Original source title
oneSCDvoice
Original updated date