Clinical trial volunteer, sickle cell disease survivor
His story: Patrick Onwuemene, age 46, was born in Lagos, Nigeria, and immigrated to the United States with his family when he was a teenager. He attended high school in Silver Spring, Maryland, played tennis and soccer, worked in a fast-food restaurant, and dreamed of becoming a mathematician or a doctor one day. Through it all, though, Onwuemene, a self-described private person, kept a secret: “I hid the fact that I had sickle cell disease,” he said. “I didn’t like the stigma it carried or the looks I got when people found out. I just wanted to be treated just like any other kid.”
The tipping point: After high school, Onwuemene enrolled at a community college while also working. He experienced a series of pain crises that sent him to the hospital multiple times, causing him to repeatedly miss school and work. He finally dropped out of school and over the next 21 years, held whatever jobs he could, including long-term work as a security guard. But pain from his disease always got in the way. The worst crises, he said, came in 2020. “I was hospitalized for days and experienced excruciating pain for hours. It was brutal, the worst pain I had ever experienced. I heard that people experiencing that much pain usually don’t survive due to their low blood count. But my faith in God helped pull me through.”
Experimental drug: Soon after this crisis, Onwuemene began to explore new ways to address his disease. In 2021, he found out about an NIH clinical trial involving an experimental drug called mitapivat, which appears to alleviate pain by reducing the sickling of red blood cells. “Since I started taking the drug, my normal hemoglobin levels kept rising. As dosages were increased, I gradually began to improve.”
Life after the drug: After two years on the experimental drug, Onwuemene said the turnabout in his health has been dramatic. “It’s like “night and day,” he said. “I feel a surge of energy that I haven’t had since my teen years. And I haven’t had any crises and I’m still pain-free. I really feel it is a wonder drug.” He comes to NIH about once a month for a health checkup as part of his trial participation.
The future: Onwuemene has finally been able to think with promise about what he wants to do with his life. “One day, I would like to be able to start playing soccer and tennis again, and maybe go back to school. I’ve recently started back to exercise, but I’m doing it gradually, one step at a time.” In the future, he hopes to have his own hospitality business.
Wise words: Over the years, Onwuemene said he has learned the value of good nutrition and gratitude, so his guidance to others with sickle cell disease is simple: “Drink lots of water, eat more fruits and vegetables, and follow the advice of your healthcare provider,” he said. “And be grateful for every little thing that you have.”