OVERLAND PARK, KANSAS — Even a literal walk in the park isn’t as easy as it sounds for Maurice Riddle. At any moment, the 37-year-old’s sickle cell disease could trigger a pain crisis.
“If it’s in your arm, just raising your arm up to scratch your chin would hurt,” the Kansas City, Missouri, man explained. “Brushing your teeth hurts. If it’s in your neck, if it’s in your back or legs, laying still hurts, sitting up hurts, standing hurts. You just don’t want to do anything.”
Curved, or sickle-shaped, red blood cells clog vessels instead of moving oxygen throughout the body like a typical, round red blood cell. That lack of oxygen means Riddle gets tired easily, is particularly vulnerable during extreme temperatures and he deals with pain powerful enough to hospitalize him.
“If the pain is bad enough, I may start demanding you cut off whatever’s hurting. It hurts that bad sometimes,” admitted the normally mild-mannered Riddle.
For years, when a pain crisis flared up, going to the hospital for an IV and pain medication was Riddle’s only option.
“We call our people who live with sickle cell warriors because of that. It takes a certain inner strength to get up and deal with that day to day,” Donna McCurry, a nurse practitioner at University Health’s Sickle Cell Center, said.
Since late 2019, McCurry has been able to offer her patients a new pill called OXBRYTA. She said the medication prevents red blood cells from taking that sickle shape.
“With any disease, the more options you have, the better. It increases that hope,” McCurry said.
Riddle started taking OXBRYTA in January 2020. Early on he had to adjust his daily dosage to avoid side effects, but within three weeks, he saw results.
“It’s encouraging to be able to tell people, ‘don’t give up,’” he said.
Riddle has had fewer pain episodes and those episodes are less extreme — he hasn’t had to spend a night in the hospital because of a pain crisis since he began OXBRYTA — and he has the energy to spend quality time with his active 8-year-old daughter.
“We can actually play soccer until she gets tired, not play soccer until I get tired,” he said.
So now that walk in the park is a lot more manageable.
Last month, the FDA agreed to review the drug for children ages 4 to 11.
McCurry, the nurse practitioner, said you can prevent sickle cell disease by knowing whether you and your partner carry the genetic trait. She encourages everyone, not just African-Americans who are most impacted by the disease, to have their blood tested.