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Sickle Cell Disease: Data Saves Lives
“One minute I’d be fine, the next minute I’d be in pain. It would just come out of nowhere,” says Tywan Willis. “I would have pain in my lower back, my shoulders, and sometimes in my legs. I can’t describe it. I just know it’s a really bad pain that I get.”
Tywan has sickle cell disease (SCD), an inherited blood disease that can run in families and causes abnormal, sickle-shaped red blood cells. Pain is the most common complication of SCD, and the top reason people with SCD go to the emergency room or hospital. Tywan is a regular patient at a new sickle cell clinic within the Martin Luther King, Jr. (MLK) Outpatient Center in Los Angeles (LA).
The Sickle Cell Data Collection (SCDC) program in California, which is funded through the CDC Foundation, and has been collecting information to monitor the long-term trends in diagnosis, treatment, and access to health care for people with SCD since 2010, provided data that highlighted the strong need for comprehensive care for adults with SCD in LA County.
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