Olaide Adekanbi has been struggling with sickle cell disease all her life. “It’s almost like I’m battling myself,” says Adekanbi, 29, who lives in Boston. “Sort of like a dark, I don’t know if you’d call it like evil within, [but] sometimes it feels like [it].
” The rare genetic blood disease is caused by a genetic mutation that causes red blood cells to become deformed, sickle-shaped. These misshapen cells clog blood vessels, damaging vital organs and causing unpredictable, debilitating attacks of pain. “It gets to the point sometimes where you’re like, ‘I cannot continue living this way,’ ” she says.
“You feel like you’re losing your mind. Because sometimes I just can’t move. I just lay in one spot and try to distract myself from the pain.
” So Adekanbi was thrilled when, in late 2023, the Food and Drug Administration approved the first genetic treatments for sickle cell , a disease that disproportionately affects Black people like her and has long been neglected by medical science. “I’m very excited for the possibilities,” she says. “This is probably the best time in history right now for sickle cell patients.
” Risks and the unknown complicate the decision But Adekanbi is unsure about whether she wants to proceed with either of the two approved genetic treatments. One big hesitation is over the chemotherapy needed to make room for genetically altered cells in her bone marrow. Those cells have been modified to alleviate the symptoms.