California Campaign Hopes to Raise Awareness About Sickle Cell Trait

Cayenne Wellness Center's 5-year campaign targets students and educators

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by Mary Chapman |

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To underscore the importance of understanding and getting tested for the sickle cell trait (SCT), the Cayenne Wellness Center has launched a campaign targeting California’s students, school athletes, parents, and educators.

The five-year Sickle Cell Trait Awareness Campaign will offer resources that will help educate people about SCT and its risks. Such resources will provide information about where people can go to get tested for the trait and find local support, as well as information about SCT and education, fitness, and nutrition.

Specifically, the effort is aimed at California’s students and athletes, from middle school through college, as well as parents, teachers, and student athlete coaches. To spread awareness, the campaign will use social media, emailed newsletters, billboards, flyers, radio spots, public service announcements, newspapers, and bus wraps.

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Campaign seeking volunteers to help with awareness efforts

The campaign is seeking volunteer “ambassadors” to help with the initiative, including spreading the word about it at schools, participating in events, and partnering with churches and social service agencies to heighten awareness.

“Knowing your sickle cell trait status is about knowing the risks,” Carolyn Rowley, PhD, executive director of the Cayenne Wellness Center, said in a press release e-mailed to Sickle Cell Disease News. “If you and your partner have the trait, you’re more likely to have children with sickle cell disease, a painful, irreversible blood disorder, so it’s important to know your trait status for family planning.”

“Additionally, athletes with sickle cell trait are more susceptible to suffering from physical issues during strenuous exercise and physical activity, which can be fatal. That’s why it’s so important to know what’s in your genes,” Rowley said.

The sickle cell trait is caused by a genetic mutation that’s passed down from a parent. Those with the trait inherit one sickle cell gene and one normal gene. By contrast, those with sickle cell disease (SCD) inherit two faulty gene copies.

People with the trait do not get SCD, although in rare cases, mutations in one gene copy can result in some milder disease symptoms, which are also more likely to occur when trait carriers experience severe dehydration or are in a low oxygen environment at high altitudes.

Knowing your sickle cell trait status is about knowing the risks. If you and your partner have the trait, you’re more likely to have children with sickle cell disease, a painful, irreversible blood disorder, so it’s important to know your trait status for family planning.

Sickle cell trait estimated to affect more than 100 million people globally

SCT is thought to affect more than 100 million people globally, and between one and three million U.S. residents, including 1 in every 12 African Americans and 1 in every 100 Hispanic Americans. The trait, which can occur in any ethnicity through population migration and marriage, is also found among other populations, including residents of Saudi Arabia and Mediterranean countries.

California has been screening newborns for the sickle cell trait since 1990. However, according to the Cayenne Wellness Center, many adolescents and adults remain unaware of their SCT status. Screening results can be requested from the state’s department of public health, or physicians can administer what’s called a hemoglobin electrophoresis test to determine a person’s trait status.

For more information about the campaign, send an email to [email protected] or call 877-773-7822.

Founded in 2000, the nonprofit Cayenne Wellness Center addresses the needs of those living with SCD, advocates on their behalf, and provides education and support to caregivers and healthcare providers. Its overarching aim is to improve the life quality of the approximately 9,000 SCD patients in California. The center is based in Burbank in southern California, where more than half of the state’s SCD patients reside.