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?

Stories of Sickle Cell

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. Future stories will include

  • A parent sharing about pivoting her life plans after taking on the role of caregiver.
  • A healthcare provider discussing how he integrates the history of race in the United States while maintaining scientific objectivity when practicing medicine.
  • A teenage pageant participant sharing how pageantry can break the barriers of prejudice against women and help women express themselves.

Visit the Stories of Sickle Cell web page often for future additions to the series.

Get to know some of the people highlighted in the project

Constance’s Story

Constance D. Benson

Constance D. Benson is a professional model and actress from Kennesaw, Georgia. She is the first person in the world to be cured of SCD via the Sickle Cell Transplantation to Prevent Disease Exacerbation In Young Adults (STRIDE) study in 2012. She shares her experience navigating life before and after her transplant and relearning her identity outside of SCD. Watch her story of self-discovery.

Tristan’s Story

Tristan

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, at age 37 Tristan is now an accomplished actor, model, and fashion designer, all while being an international advocate and SCD warrior. Watch Tristan tell his story and read about it.

Harry’s Story

Harry Williams Jr

Harry Williams Jr. is 44 years old, married, and a public health analyst and former adjunct professor. He is also an SCD warrior and advocate who doesn’t allow his condition to limit him from achieving his goals. While a professor at two colleges, Harry had many students who were future healthcare management administrators and care providers. He used opportunities to educate them on the topic of SCD and the importance of providing patient-centered care that is unbiased and respectful. Read Harry’s story.