OVERLAND PARK, Kansas. For Maurice Riddle, even a real walk in the park is not as easy as it sounds. At any time, the 37-year-old sickle cell disease can trigger a pain crisis.
“If it’s on your arm, it’s painful to just raise your arm to grab your chin,” the man in Kansas City, Missouri explained. “Toothbrushing hurts. If it’s on your neck, if it’s on your back or legs, it still hurts when lying down, sitting up, or standing up. You just don’t want to do anything.”
Curved or sickle-shaped red blood cells block blood vessels instead of moving oxygen throughout the body like the typical round red blood cells. The lack of oxygen means that Riddle gets tired easily, is particularly vulnerable to extreme temperatures, and his pain is enough to make him hospitalized.
“If the pain is severe enough, I might start asking you to cut off anything that hurts. Sometimes it really hurts,” admits Riddle, who is usually polite.
For many years, when the pain crisis broke out, going to the hospital for intravenous injections and painkillers was Riddle’s only option.
“So we call people who live with sickle cell warriors. It takes a certain amount of inner strength to get up and deal with this situation every day,” said Donna McCurry, a nurse practitioner at the University Health Sickle Cell Center.
Since the end of 2019, McCurry has been able to provide her patients with a new pill called OXBRYTA. She said the drug can prevent red blood cells from becoming sickle-shaped.
“For any disease, the more options you have, the better. It increases this hope,” McCurry said.
Riddle started taking OXBRYTA in January 2020. In the early days, he had to adjust the daily dose to avoid side effects, but within three weeks he saw the effect.
“It is encouraging to be able to tell people’don’t give up’,” he said.
Riddle has fewer pain episodes, and these episodes are not so extreme-since he started using OXBRYTA, he has not spent a night in the hospital due to a pain crisis-and he has the energy to spend a good time with him for 8 years of active ——Old daughter.
“We can actually play football until she is tired, not football until I am tired,” he said.
So walking in the park is now easier to manage.
Last month, the FDA agreed to review the drug for children aged 4 to 11.
Practicing nurse McCurry (McCurry) said that you can prevent sickle cell disease by knowing whether you and your partner carry the gene signature. She encourages everyone, not just the African Americans most affected by the disease, to get blood tests.