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Dr. Carolyn Rowley explains, the whole reason for the Sickle Cell Trait Awareness Campaign (STAC) is to start talking about it.
In January, the Sickle Cell Trait Awareness Campaign (STAC) was launched from the Cayenne Wellness Center, which supports individuals living with sickle cell disease in California. Sickle cell trait (SCT) is often asymptomatic so many individuals who inherited it might not be aware unless they reviewed their newborn screening or had genetic testing done.
While sickle cell trait complications are minor compared with those associated with sickle cell disease (SCD), there are reasons to figure out if you're a carrier. In an interview with HCPLive, Pat Corley, RN, and Carolyn Rowley, PhD, Executive Director, Cayenne Wellness Center, explain why sickle cell trait awareness is crucial, especially among adolescents, and what led to the birth of STAC.
"It's not talked about, that's the whole reason for this campaign," Rowley said. "To me it's public health, so we're taking it on because no one else has."
In 2006, newborn screening was implemented, though certain states had already begun. However, even if a newborn's been screened, that doesn't necessarily mean that child, adult, or family, is aware of those results. Until it was recently observed that sickle cell trait does come with symptoms in some cases, it was thought to be completely asymptomatic.
"It was important to inform parents who had children with sickle cell disease that their child had a disease state, but it was unimportant to inform them that their child had sickle cell trait, which is the carrier state of the disease," Corley explained.
Since then, the understanding around sickle cell trait has grown.
"We now know that there are things that sickle cell trait predisposes one to, and so, now we have to go back and retract, and determine that we need to have a purposeful walk in this community to inform people about sickle cell trait," Corley continued. "And that there are chances that they can have problems if they overexert, or problems if they go to places where there's less oxygen, that there's a risk for a unusual form of cancer related to sickle cell disease - a kidney cancer - that there are other complications that can happen as a result of sickle cell trait."