Sickle cell disease impacts thousands every year, and people of color make up a large percentage of those affected.
But more than 100 years after its discovery, treatment hasn’t come very far. So far, only three medications approved by the Food and Drug Administration are on the market.
Juneteenth is recognized as the day slaves in Galveston, Texas, found out they were free. But June 19th is also World Sickle Cell Day. It’s a blood disorder inherited from parents. There’s not much people can do to prevent it, but experts say everyone can be prepared.
Sickle cell disease gets its name from the sickle-shaped blood cells that form in people who have it. Duane Alexander is one of the thousands living with sickle cell.
“As a kid, I really didn’t let a lot of people know what I was dealing with internally. I didn’t know how they were going to look at me. I didn’t think I’d have friends,” Alexander said.
The sickle-shaped cells can cause blood clots. As a result, restricted blood flow and oxygen to the organs causes extreme pain.
“And picture a semi-Mack truck about to hit you. That’s how excruciating the pain is. That’s how bad it hurts,” Alexander said.
Gary Gibson is president of The Martin Center in Indianapolis, IN. The non-profit works with families impacted by sickle cell, providing outreach, resources and more.
“It’s something they were born with and in a lot of ways it’s unfair to hand somebody this kind of life when they didn’t do anything to deserve it,” Gibson said.
When it comes to ethnic minority population, according to the Centers for Disease Control and Prevention, Black people make up the largest percentage, followed by Latinos then Asian and Pacific Islanders.
“Sickle cell disease appears to have originated from the bodies attempt to fight malaria,” Gibson said.
Sickle cell traits are passed to children by their parents. If one parent has the trait and the other doesn’t, the child won’t develop the disease. But if both parents have the sickle cell trait, there’s a 50 peercent chance a child will develop it.
“If you’re wanting to have a family, I would always recommend going to the doctor to get a test done, especially for the parents who have traits,” Shelly Hatcher also with The Martin Center, said.
Alexander said he’s holding out hope one day there will be a cure.
Martin Center representatives said anyone can find out if they have the sickle cell trait relatively easily by asking for a blood test at the doctors office.