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Sickle Cell Speaks: Misconceptions about the disease

Posted: 1:38 PM, Sep 10, 2019
Updated: 2019-09-11 19:15:45-04

Have you ever heard that sickle cell disease (SCD) is contagious or people with sickle cell are lazy?

Believe it or not, these are just two of many common misconceptions people with SCD have to confront, leaving people with this genetic blood disorder feeling misunderstood and often isolated.

Cultural barriers and misinformation about SCD have contributed to its misunderstood reputation, and it is more important than ever to educate people in the U.S. about the disease so we can reduce the ignorance surrounding it. Storytelling is among the best ways to bring awareness to the disease and help squash associated misconceptions and stigmas.

The SCD experience is highly varied. By highlighting personal stories of individuals with the disease, it can help to bring about a better understanding of the challenges people face. Historically, SCD has been affected by issues of healthcare inequality, including challenges in access to care and limited funding support.

Sickle Cell Speaks is a new campaign that aims to raise awareness and understanding of sickle cell by highlighting the personal stories of individuals and families impacted.

SCD is a group of inherited red blood cell disorders which affect approximately 100,000 people in the U.S., with people of African descent making up 90% (1 in 365 births). The most talked about symptom is often severe pain episodes or crises, but one of the most serious consequences of SCD is hemolytic anemia, or the destruction of red blood cells. The damaged blood vessels reduce blood flow to organs in the body, and this reduced blood flow permanently injures key organs and puts patients at a greater risk of stroke and early death.

Learn more about Sickle Cell Speaks .