Kevin Wake has suffered three strokes. He is only 54. The first one taught him how humiliating an emergency room visit can be for Black people living with the blood disorder sickle cell disease. It happened in Chicago, where the Kansas native was living in 1999. By the time he arrived by ambulance at the hospital he was immobile, unable to stand or speak. “They started triaging me as Black male in his 30s who is either intoxicated or high on drugs,” Wake recalled recently. All he could do was shake his head desperately. He finally caught the attention of a nurse and motioned he wanted to write something. “I scribbled three words: sickle cell stroke,” he said. The assumption that he was a drug abuser, presumably because he was Black, “angered me,” he said. “But it also made me realize that … you can’t look at somebody and tell if they have sickle cell.” Sickle cell patients and their advocates often feel unseen as they work to educate both the public and the medical community itsel...