World Sickle Cell Day 2018: Empowering Teenagers to ‘Step Up’
Today we recognize World Sickle Cell Day (observed each year on June 19) to help raise awareness of this challenging disease. Sickle cell disease (SCD) is the most common inherited blood disorder in the United States, affecting an estimated 90,000 to 100,000 Americans. SCD can also be extremely painful and is associated with a number of severe health complications.
As young people with SCD get older, their symptoms may grow more pronounced. This year, in observance of World Sickle Cell Day, the Centers for Disease Control and Prevention (CDC) is highlighting the transition period from pediatric to adult care for young adults. During transition, kids with SCD are learning how to manage their health and their own care. Transitioning care is a big step toward adulthood and gaining independence, but it can be a challenging process to navigate.
To communicate the importance of preparing for transition to those impacted both directly and indirectly by SCD, CDC has released new resources that shed light on the realities of SCD as a young adult. One of the main features is titled “Stepping Up: A 2-Part Video Series for Teenagers & Young Adults with SCD.” The videos highlight Kevin and Calvanay who share their thoughts about transition, how it affected them and how they overcame challenges.
Kevin, a 19-year-old student studying video game design, discusses his experience with SCD. Earlier in his teens, Kevin made the life-changing decision to stop taking his SCD medicine in an effort to better understand his illness. His doctors described the benefits of the medicine and his mother encouraged him to take charge of his own health. “It hit me pretty hard that she gave me the freedom to choose something that would split my life into two different stories, but it did feel good to have that kind of say in my own life,” Kevin explained. The video concludes with several important takeaways about preparing for transition, including: Although it is important for young adults with SCD to to take ownership of their health, it is always acceptable to reach out to trusted adults for help if needed.
Calvanay, a 25-year-old certified nursing assistant, speaks about her personal experience with SCD as both a patient and a caregiving professional. One of Calvanay’s main reflection points in the video is the importance of self-advocacy, which includes speaking or acting for oneself to improve quality of life, make personal change or to correct inequalities. Throughout Calvanay’s anecdote, it becomes clear that one way patients with SCD should be prepared to self-advocate is by educating providers less familiar with SCD about their condition.
As we commemorate World Sickle Cell Day, it is important to take into account those who have been affected by SCD. In the past few decades, we have come a long way in better understanding the disease; however, there is much more to learn and much more work to be done.
To help address this need, the CDC Foundation is partnering with CDC’s Division of Blood Disorders, Tracking California and the Georgia Health Policy Center to support the development and operation of a longitudinal data collection system for people in the United States with SCD, called the Sickle Cell Data Collection (SCDC) program. To date, the program has received funding support from Pfizer Inc., Bioverativ, Global Blood Therapeutics and the Doris Duke Charitable Foundation. The program is currently focused on the states of California and Georgia, collecting health information about people with SCD to study long-term trends in diagnosis, treatment and healthcare access. As more resources become available, the program can potentially be expanded to include additional states. We are proud of this effort that is identifying critical gaps, increasing understanding of SCD and saving and improving the lives of those suffering from this challenging and painful disease.
Help us spread the word about SCD on World Sickle Cell Day by sharing these resources on social media, and following @CDC_NCBDDD on Twitter to stay-up-to-date on SCD-related activities.