A new patient-led advocacy group is hoping to raise awareness for sickle cell disease by organizing a blood drive on Jan. 9. Organizers say they want to provide a resource for those in the Greenville community who have the blood disease as well as inform the public about the challenges those with sickle cell face.
Toyanita Jones, one of the organizers behind Sickle Cell Lights of Hope, says they hope not only to educate the community but also to help collect needed blood for patients with sickle cell disease — some sickle cell patients require blood transfusions often.
The blood drive will be held at the Phillis Wheatley Community Center, 335 Greenacre Road, from 11 a.m. – 4 p.m.
Sickle cell is a group of red blood cell disorders. Those with the disease have red blood cells that become hard and sticky and form a C-shape look — which is why it’s referred to as “sickle” cell. The cells then get stuck into the blood vessels. The disease occurs in about 100,000 Americans, according to the Centers for Disease Control and Prevention. It occurs in 1 out of every 365 Black births and 1 out of 16,300 Hispanic-American births.
Jones, who suffers from sickle cell, says the pain can be excruciating, comparing it to to a charley horse, “but 10 times worse than that.”
“It can come anywhere in your body, your legs, your arms, your back,” she explains. She says because of the disease, she can’t work because sickle cell can be triggered so easily. “It’s been a real silent disease.”
Sickle cell disease occurs in about 100,000 Americans, according to the Centers for Disease Control and Prevention. It occurs in 1 our of every 365 Black births and 1 out of 16,300 Hispanic-American births. Source: CDC
Jones says there needs to be more attention to researching sickle cell. Dr. Alan Anderson of Prisma Health agrees.
“Sickle cell is considered an orphan-designated disease process, like cystic fibrosis and some other things that affect a significant numbers of Americans, but it hasn’t had the political focus and the funding structure and the research focus that other disorders have had historically,” says Anderson, who runs Prisma’s Comprehensive Sickle Cell Disease Program. Anderson says it’s the most inherited blood disorder.
There’s also an issue of race, says Anderson.
“If you have a pain disorder that affects a lower socioeconomic class and predominantly affects African Americans, then it really is a microcosm of all the race relations issues that we have in our country and all wrapped up into a disease process,” Anderson says.
Anderson says people have gone into the emergency room for pain issues related to their sickle cell disease and have been mistaken for drug seekers.
City Councilwoman and Mayor Pro Tem Lillian Brock Flemming, who has advocated for sickle cell disease awareness, says some medical professionals aren’t educated about sickle cell.
“They didn’t know any more about sickle cell than anybody else, and so [they] thought people, because they were Black, they were drug addicts,” she says. “That’s been a problem: It’s this discrimination area, and the lack of adequate care.”
Blood drive on Jan. 9, 2021 from 11 a.m. – 4 p.m. at the Phillis Wheatley Community Center
335 Greenacre Road, Greenville