Stories of Sickle Cell
This Sickle Cell Disease Awareness Month (observed every year in September), the Centers for Disease Control and Prevention (CDC) is launching the Stories of Sickle Cell project. Learn about sickle cell disease and check out some of the resources included in the project.
What is sickle cell disease?
Sickle cell disease (SCD) is a group of inherited blood disorders that can cause red blood cells to become hard and sticky, blocking blood and oxygen from reaching all parts of the body. This blockage can lead to intense pain (also known as a pain crisis), life-threatening infections, stroke, and other serious complications (health problems). SCD can be managed by focusing on preventing and treating these complications with lifestyle changes, medical screenings and interventions, and specific treatments to help improve quality of life and lengthen the lives of those living with SCD.
What is the Stories of Sickle Cell project?
The Stories of Sickle Cell project shares the unique stories and diverse identities of those living with SCD. People living with SCD are more than just their disease. They are people with real passions and dreams who experience struggles, successes, and failures just like everyone else. They live with SCD, but the disease doesn’t define who they are and what they are able to achieve. Through videos, short stories, and a photoblog, the Stories of Sickle Cell series aims to provide a deeper understanding of people living with SCD to help destigmatize the disease and inspire action to support the SCD community.
What types of stories are included in the project?
The series includes a range of stories from people living with SCD, family members and caretakers of people living with SCD, and healthcare providers caring for people with SCD. Stories of Sickle Cell is an ongoing project that will be updated with new stories throughout the year.
Get to know some of the people highlighted in the project
Ayana’s Story
Ayana Johnson is an accomplished student, violinist, dancer at Governor’s School for the Arts, small business owner, and winner of Miss Virginia’s Outstanding Teen competition. Ayana uses her platform to advocate for SCD warriors everywhere. One of Ayana’s many passions include participating in pageantry. “I think the really cool thing about pageantry, and specifically the Miss America system, is that you’re able to showcase what your thoughts are. … I just learned a lot through pageantry. Five years ago, I would not be able to sit here and tell you about my life and share my story in a way that can be motivating to other people,” she says. Watch more about Ayana’s experience as a pageantry participant.
Dr. Lauren Smith’s Story
Dr. Lauren Smith is the chief health equity and strategy officer for the CDC Foundation. Dr. Smith has more than 25 years of experience working in the fields of healthcare delivery and management, public policy, and public health. “Because of pain crises and other complications, kids with sickle cell disease miss an incredible amount of school. In addition to the educational aspect of missing school, there’s the social disruption. It’s a really important part of childhood and youth to be able to make those social connections and to have peers,” shares Dr. Smith. Watch as Dr. Smith shares her insights into health equity and SCD.
Tristan’s Story
Tristan was diagnosed with SCD at 6 months of age, and his mother was told he wouldn’t live past age 20. At age 9 Tristan experienced a stroke due to SCD and was paralyzed on the left side of his body. Despite his diagnosis and SCD complications at an early age, Tristan is now an accomplished actor, model, and fashion designer. He is also an international advocate and SCD warrior. Watch Tristan’s story or read about it.
