New Sickle Cell 101 campaign aims to raise sickle cell trait awareness
Pro football star DPJ teams up with nonprofit to educate about trait
Sickle Cell 101 is teaming up this summer with Cleveland Browns player Donovan Peoples-Jones — known to fans as DPJ — and his Limitless Foundation Football Camp to raise awareness about sickle cell trait and hydration, both key issues for people living with disorders like sickle cell disease (SCD).
The Sickle Cell Trait Awareness and Hydration Campaign is part of the nonprofit’s annual summer efforts to provide important information and educate others about SCD and related conditions. The nonprofit bills itself as “the largest global online platform solely dedicated to sickle cell education, awareness and research.”
The focus of this year’s campaign is the sickle cell trait and the importance of hydration, especially for athletes. The campaign is sharing research on the possible complications related to sickle cell trait, and offers webinars and educational sessions on the Sickle Cell 101 digital platforms.
“Our ultimate goal is to empower everyone to stay educated about sickle cell trait and make informed decisions about their health,” Cassandra Trimnell, founder and executive director of Sickle Cell 101, said in a press release.
“The sickle cell community is always grateful to have Donovan as a very important voice and advocate for us in diverse ways, especially through his continued partnership with Sickle Cell 101,” Trimnell said.
Summer campaign also focuses on dangers of dehydration
Sickle cell disease, known as SCD, is caused by mutations in the HBB gene, leading to the production of a faulty version of hemoglobin — the protein that carries oxygen in red blood cells. To develop the disease, people have to inherit two defective gene copies, one from each parent.
People with the sickle cell trait have only one copy of the mutated sickle gene and do not usually experience complications associated with SCD. However, under certain extreme conditions like dehydration, overexertion, or low oxygen at high altitudes, individuals with the sickle cell trait also may also experience some disease symptoms and complications.
Sickle cell trait is thought to affect between 1-3 million people in the U.S., including 1 in every 12 African Americans and 1 in every 100 Hispanic Americans.
As part of its education campaign, Sickle Cell 101 cites a recent study suggesting that only 16% of Americans know their sickle cell genotype, or gene variant. The nonprofit notes that newborn screening was only mandated in the early 2000s.
This [campaign] serves as a reminder for us all about the importance of everyone knowing and understanding their sickle cell genotype.
During sports practice — including summer football camps, like those hosted by Peoples-Jones — athletes may experience exercise overexertion due to dehydration.
For those with the sickle cell trait, such overexertion can cause rhabdomyolysis, a condition characterized by muscle death, which can lead to the release of toxic components to the bloodstream, and potentially to kidney damage.
Thus, irrespective of their sickle cell genotype, athletes are advised to stay hydrated during sports practice to avoid exertion.
“Athletes should be able to have fun and enjoy sports, and we want to be proactive and ensure that sickle cell trait will not be a reason why an athlete gets sidelined and misses out on the sports they love,” said Stephen Boateng, director of research and partnerships, and sickle cell trait expert educator at Sickle Cell 101.
“As an athlete, if you see or feel something isn’t right with your teammate, irrespective of their sickle cell genotype, say something right away and don’t wait. You could save a life,” he added.
The campaign’s efforts are directed toward parents, coaches, and families — and specifically those attending the Limitless Foundation’s football camp, who can visit the Sickle Cell 101 booth for educational resources on sickle cell trait.
“Having Sickle Cell 101 at this camp is extremely important because it’s all about awareness, especially in our community,” said Krandall Pettway, a camp parent from Dallas.
“This serves as a reminder for us all about the importance of everyone knowing and understanding their sickle cell genotype,” Pettway said.