World Sickle Cell Day

This World Sickle Cell Day (observed every year on June 19), the Centers for Disease Control and Prevention (CDC) is highlighting information and resources focused on emergency department care for people with sickle cell disease!

Sickle cell disease (SCD) is an inherited blood disorder that causes “sickle” shaped red blood cells that can stick together, blocking blood flow and oxygen from reaching all parts of the body. People with SCD can experience serious pain (also known as pain crises), anemia, infection, and other serious health problems that may require treatment by a healthcare provider. Children and adults with SCD often require care in the emergency department (ED) of a hospital or clinic for treatment when health problems such as pain crises cannot be managed at home.

The Sickle Cell Data Collection (SCDC) program (CDC’s current SCD monitoring project) found that, in California, people with SCD seek care in the ED an average of three times a year from their late teens to their late 50s. Studies have shown that patients with SCD frequently have difficulty getting proper treatment when they arrive in the ED.  This World Sickle Cell Day, CDC is shining a light on some of the reasons people with SCD experience barriers to care in the ED and sharing resources to help improve ED care for the SCD community.

Read personal stories from two women with SCD and their experiences in the ED.

Constance

“You’re too pretty to have a disease,” declared the nurse in the ED, dismissing Constance’s reports of unbearable pain, a byproduct of her SCD. Constance, who is in her late twenties, is a professional actress and model.  It wasn’t until Constance’s blood tests came back with information about her blood count that she was treated with the care and attention she deserved. “If I had a broken leg, it would be different. If I was having a heart attack, it would be different. But because I had SCD and I look like a normal person, my pain was dismissed.”

Read more about Constance’s experience.

Mimi

Mimi’s genetic (inherited) blood disorder comes as a surprise to many healthcare providers when they first meet her because of one detail: she’s not African American. “When I’m in that moment of pain in the emergency room, I can’t even think for myself. The pain is debilitating and they’re asking me questions like, ‘Are you sure you have sickle cell? We need to look into this,’” says Mimi, a lawyer and mom of four.  Mimi’s medical history is similar to that of many individuals with SCD: she has experienced severe pain since a young age, frequently sought care in the ED, and has received numerous blood transfusions (when healthy blood is given to a patient through one of their blood vessels).

Read Mimi’s story.

Find resources and information about emergency care for people with SCD below.

Fact Sheets

• 3 Tips About Sickle Cell Disease Every Emergency Provider Needs to Knowpdf icon
• Do You Use the Emergency Department for Care of SCD? What to Know Before You Go.
  Englishpdf icon; Frenchpdf icon; Spanishpdf icon
• Sickle Cell Disease Tips for Healthy Living/Emergency Guide: When to See the Doctor.
  Englishpdf icon; Frenchpdf icon; Spanishpdf icon

Scientific Publications

• Emergency department utilization by Californians with sickle cell disease, 2005-2014external icon and a summary of its key findings
• Sickle Cell Disease in the Emergency Department, published in the 2020 Special Supplementexternal icon of the Annals of Emergency Medicine

Upcoming Webinar

• Breaking Down Barriers to ED Care for People with SCD, a webinarexternal icon cohosted by the CDC and the American College of Emergency Physicians. This webinar will feature a panel of people with sickle cell disease sharing their experiences with care in the ED, and it is scheduled to take place on June 16^th from 2-3pm ET (1-2pm CT). Registration is free but limited to the first 1,000 individuals. Create an account here to registerexternal icon (ACEP membership not required).

Other Links of Interest

• Managing Sickle Cell Disease in the ED Point of Care Toolexternal icon developed by the American College of Emergency Physicians (ACEP)
• Sickle Cell in the ED – Improving and Standardizing Care ACEP Frontline Podcastexternal icon
• Emergency Department Sickle Cell Disease: Crisis Management and Beyond, Duke University’s websiteexternal icon supporting clinicians in their care of children and adults living with SCD
• Sickle Cell Disease Care in the Emergency Department: Improvement Initiatives and Ongoing Research, a webinar hosted by the U.S. Department of Health and Human Services Office of Minority Health; National Heart, Lung, and Blood Institute; and ACEP