For Oyebimpe Adesina, M.D., growing up in Nigeria meant living in the shadow of sickle cell disease (SCD). She was only 8 or 9 when a neighbor’s child stopped coming over to play; she remembers how difficult it was for her to explain to her younger sisters that the little girl had died from complications of SCD. A few years later, a classmate disappeared for several weeks. When she returned, her right side was paralyzed by stroke — a common occurrence for children with severe SCD. Adesina still recalls laying her left hand over her friend’s, helping her learn to write again.
“I knew from that age, maybe even before, that I wanted to do something related to medicine,” says Adesina, now a researcher in the Division of Hematology at UW Medicine and a hematologist with Seattle Cancer Care Alliance. “I knew very little about sickle cell disease at the time, but I was determined to learn.”
Although Nigeria has the highest incidence of SCD worldwide — an estimated 90,000 newborns had sickle cell anemia in 2010 — profound stigma abounds. Many believe, wrongly, that all people with sickle cell disease are cognitively impaired, financially burdensome and infertile. That they can’t live healthy, productive lives.
“Even within the sickle cell community, many have a lot of misconceptions about their disease. Educating people is a big part of why I went into this field,” says Adesina.
You could argue that sickle cell disease is poorly understood in the U.S., too. In this country, SCD is so rare that it’s an “orphan” disease, one that affects fewer than 200,00 people nationwide. Yet cystic fibrosis, another orphan disease that affects even fewer Americans, is much better known — and receives significantly more research funding.
“SCD mostly affects people of color, and many people also struggle with significant poverty and chronic pain,” says Adesina. “Racism, racial bias, healthcare disparities and a lack of education overlay the physical challenges of SCD. As a researcher, it’s hard to garner interest in SCD outside of the hematology community, and funding is increasingly difficult to find.”
So when Adesina heard that a potential donor wanted to meet her — and learn more about SCD — it came as quite a surprise. “I could have fallen off my chair,” she laughs.
That donor was Quinn Cosgrove, 25, a trader with The Energy Authority. When Cosgrove met a friend’s 5-year-old son, who had recently undergone a bone marrow transplant to treat SCD, he became curious. The more he talked to Adesina, the more he was impressed by her work, eventually making a gift to support her clinical trial for sickle-cell-related chronic bone pain.
“If I can help progress the scientific research and help future patients, it’s worth it,” says Cosgrove. For him, it’s also a way to show appreciation for the care his family has received over the years at UW Medicine, Seattle Cancer Care Alliance and Fred Hutchinson Cancer Research Center. “Hopefully, my friend’s son will never experience the kind of pain Dr. Adesina sees on a daily basis,” Cosgrove says.
There’s still a long way to go with SCD awareness and research, but Adesina has a vision for the future that’s deeply influenced by her past. “My biggest goal is increasing empathy and genuine curiosity about SCD,” she says. “We don’t have to accept long-standing inequality. By changing one person’s mind at a time, we can give this disease a face. SCD does not have to remain hidden in the shadows anymore.”