Sickle Cell Disease Program Creates New Pain Management Protocol and Expands Psychosocial, Neurological, Scheduling and Patient Navigation Support
Written by Elizabeth Dimarco, On the Pulse, February 28, 2023.
When patients and families with sickle cell disease (SCD) call Seattle Children’s to schedule appointments, they are greeted by the friendly voice of Enjoli Harris, who is a skilled member of the SCD patient scheduling team and a “sickle cell mom.”
Harris’ youngest child, Nehemiah, was diagnosed with SCD at birth almost 12 years ago and has been receiving care at Seattle Children’s, including at the Odessa Brown Children’s Clinic (OBCC), ever since. The frequent visits have helped Harris not only empathize with the concerns of families, but also better navigate their scheduling needs.
SCD is a group of blood conditions that affect hemoglobin, the part of red blood cells that delivers oxygen to cells in the body. In the United States, approximately 100,000 Americans are affected by SCD, most of whom are of African or Hispanic heritage, however the disease can affect anyone, especially people of southern European, Middle Eastern or Asian Indian heritage.
Children with SCD go to a lot of appointments. At any given time, Harris juggles the schedules of more than 140 SCD families who need to arrange care visits for transcranial doppler ultrasounds, blood draws, pulmonary function tests, ophthalmology exams, nutritional support, physical therapy, speech therapy, psychological visits, cognitive screenings or pain management. The SCD team’s goal is to coordinate multiple appointments into one visit, so families don’t have to make numerous trips or take extra time off work. Read full post »