Patient advocate, clinical research trial participant
His story: Yaw Lokko, a 59-year-old from Burtonsville, Maryland, has lived with sickle cell disease all his life. And that means he knows excruciating pain. And when that happens, he has had to get help, and fast. It’s one reason Lokko is an enthusiast for SCD clinical research, and why he volunteers to participate in it. “My hope is to avoid the emergency room,” Lokko said. “I also want to have a much easier life.” Over the last year, he has been testing the safety and early effectiveness of mitapivat, an oral therapy that may improve anemia and alleviate pain by stimulating production of the enzyme pyruvate kinase in red blood cells (PKR). PKR activators are being studied for their ability to support red blood cell health and metabolism. Participating in this kind of sickle cell disease research “is important for my health,” Lokko said. By learning how the condition affects him, he continues to take steps to support living a long, healthy life.
How the trial has helped: “I feel a lot better,” Lokko said. “I exercise and go for a bike ride every morning.”
Life as a study participant: “This is a blood disease,” Lokko said. “It’s important to be aware.” Lokko meets with researchers each month for blood draws, echocardiograms, a walking test, bone density scans, and to share other measures of his health, and studies the results.
What he watches for: “My goal is to keep everything in a normal range,” Lokko explained. He looks for indicators of red blood cell health, which may provide clues about a future pain crisis. He assesses changes in neutrophils, a white blood cell whose numbers increase in response to illness or infection.
How he supports his health: “I drink lots of fluids, eat a healthy diet, take my medications, even if I’m feeling good, and make every doctor’s appointment,” Lokko said. And to minimize pain triggers, “I try to avoid the heat, avoid the cold. It’s not always easy, but it’s good to pay attention.”
What he advises: “Be aware of how sickle disease affects you,” Lokko tells others living with sickle cell disease. And share that information with your doctor. “It’s good for patients to be advocates,” he explained. “You are the one living with the disease.”