Sickle Cell Disease (SCD) is an inherited blood disorder that can cause pain, anemia, infection, and other serious health problems.
As young people living with sickle cell disease (SCD) age, their health care needs change. The teenage years are often the time when their health care transfers from a pediatrician to a doctor who treats adults. This is complicated by a national shortage of knowledgeable doctors who care for adults with SCD. At the same time, teenagers with SCD are learning to become responsible for their own health and healthcare decisions.
This period in young people’s lives is known as ‘transition.’ Transitioning care from pediatric to adult care is a big step towards adulthood and gaining independence, but it can be a scary and challenging process to navigate. This World Sickle Cell Day, observed each year on June 19, the Sickle Cell Disease Foundation of California (SCDFC) and the Centers for Disease Control and Prevention (CDC) are providing special support to young adults living with SCD.
This is the second year that SCDFC provides the successful SC Crew Transition Program for transitioning teens. Meet Ups are held monthly in Southern California with an average of 20 participants. The SCDFC team developed a curriculum to ensure each crew member could ask and respond to questions about their sickle cell disease. The program includes mock clinics that allow teenagers to practice seeking care in an adult clinical setting. Teens also enjoy fun gatherings.
World Sickle Cell Day took place June 19 with the CDC releasing a new two-part video series focusing on health care transition among teenagers and young adults living with SCD. The videos feature Northern Californians, Kevin and Calvanay, two young adults with SCD, who discuss transition, how it has affected them, and how they’ve overcome challenges.
The exact number of people with SCD is unknown, but estimates suggests that approximately 100,000 people in the United States are living with SCD, with approximately 7,000 in California. Another estimated 250,000 people in California, mostly African Americans, carry the sickle cell trait. When two people with the trait have a child, there is a 1 in 4 chance of having a baby with this life-threatening and painful disease.
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