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Our healthcare system abandons adult sickle cell patients
When Janoi Burgess was a child, he thought doctor appointments were fun.
“I used to love it because they had a section where you could play games,” said Burgess, who was born with sickle cell anemia, an inherited blood disorder. “They were really nice and friendly.”
But when he turned 21, the South Florida resident could no longer go to his pediatric specialist. Instead, he “bounced around” to various primary-care doctors for adults, none of whom seemed well versed in the details of his condition. When he had a painful sickle cell crisis two years later, his only choice was to go to a hospital emergency department, where, he says, he waited three hours for pain medication.
people & placesIsaac Odame, MB ChB, MRCP, FRCPath, FRCPCH, FRCPCDr. Isaac Odame is a staff physician and...
people & placesBetty Pace, MDDr. Betty Pace is a pediatric hematologi...
people & placesSickle Cell Disease Program at Arkansas Children’sArkansas Children's is the only hospital...
people & placesSickle Cell Pulmonary Clinic, Connecticut Children’s Medical CenterConnecticut Children’s is one of the f...
education & researchAcute Care Utilization Is More Common in Patients with Sickle Cell Disease Who Have Chronic Complications and Chroni...Background: We undertook a large multisi...
education & researchA Genome-Wide Association Study Identifies Blood Disorder–Related Variants Influencing Hemoglobin A1c With Implica...OBJECTIVE We aimed to identify hemoglobi...
news & eventsSpearheading change on World Sickle Cell DayThis year on World Sickle Cell Day, a ne...
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This platform is made possible through a partnership with the Sickle Cell Disease Association of America, Inc. (SCDAA) and its member organizations. SCDAA's mission is to advocate for people affected by sickle cell conditions and empower community-based organizations to maximize quality of life and raise public consciousness while advancing the search for a universal cure.