Story by: Kim Huston on September 4, 2020
Sickle cell disease (SCD) is one of the most common genetic disorders in the world. Each year, 1,000 babies in the U.S. and 500,000 children worldwide are born with the condition, according to the Sickle Cell Disease Association of America. September is National Sickle Cell Awareness Month –– what should you know about this condition?
Sickle cell disease is a group of inherited red blood cell disorders. Red blood cells are round and carry oxygen — they move throughout the body through blood vessels. SCD causes red blood cells to be hard, sticky and have the namesake “sickle” shape that looks like the C-shaped farm tool or a crescent. The sickle-shaped red blood cells die earlier than normal red blood cells, causing a person with SCD to have a constant shortage of red blood cells.
Because of their shape, sickle cells also can get stuck together in small blood vessels. This can cause a blockage in blood flow and oxygen to the body’s organs. These blockages can cause issues throughout the entire body, including repeated episodes of severe bone pain; lung, heart, gastrointestinal and urogenital conditions; organ damage, serious infections, or even seizures and stroke.
Call for sickle cell disease care.
Norton Children’s Sickle Cell Disease Program is the leading program in Kentucky, and one of only a few locations in the country to provide automated red blood cell exchange for children. Our program includes a comprehensive transition program that helps young adults transition from pediatric sickle cell care to adult care.
Our comprehensive pediatric sickle cell transition program provides a structured, education-based curriculum to patients starting at 12 years of age. It’s designed to prepare patients for management of their own health care needs into young adulthood and an eventual change in providers. Our approach for transition includes the patient; pediatric and adult providers; and members of the Sickle Cell Association of Kentuckiana, a community-based organization; to help encourage self-management and independence and other positive ways to prepare adolescents for transition.
These transition efforts are designed to help patients have lifelong well-being. The approach can help tackle health care disparities by providing support; promoting acquisition of independent knowledge and skills; and setting expectations for an adult model of care. Developmentally appropriate interventions for sickle cell patients help ensure uninterrupted continuity of care.
By being prepared with resources, knowledge, and support, teens with SCD can overcome challenges and stay healthy during transition and beyond.