August 23, 2017
Hertz Nazaire is a soft-spoken artist who likes to paint in bright colors, with subjects like rainbow palm leaves and dancing women in twirling skirts. But one series of paintings he’s created is darker. Here, deep-red discs contrast with misshapen, bluish-purple ones against a black background. One canvas shows an African face drowning in the red and blue shapes, eyes streaming with tears, mouth agape in pain. The work reflects his lifelong struggle with sickle-cell disease.
Nazaire, a 43-year-old Haitian-American, figures he’s been hospitalized more than 300 times since he was a child. He and other sickle-cell patients will tell you that the worst part of the disease is the debilitating pain. “It’s a horrifying thing to have, because it’s extremely painful. It’s a major fight all the time,” he says.
Roughly 100,000 people in the U.S. have sickle-cell disease, most of them African-Americans and Latinos but also people of Middle Eastern, Asian, Indian, and Mediterranean descent. Compared with the average American, they live much shorter lives—about 40 to 60 years.
MIT Technology Review
The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.