By Jenny Gold, California Healthline
For more than a year, NeDina Brocks-Capla avoided one room in her large, brightly colored San Francisco house — the bathroom on the second floor.
“It was really hard to bathe in here, and I found myself not wanting to touch the walls,” she explained. The bathroom is where Brocks-Capla’s son Kareem Jones died in 2013 at age 36, from sickle cell disease.
It’s not just the loss of her son that upsets Brocks-Capla; she believes that if Jones had gotten the proper medical care, he might still be alive today.
Sickle cell disease is an inherited disorder that causes some red blood cells to bend into a crescent shape. The misshapen, inflexible cells clog the blood vessels, preventing blood from circulating oxygen properly, which can cause chronic pain, multi-organ failure and stroke.
About 100,000 people in the United States have sickle cell disease, and most of them are African-American.
Patients and experts alike say it’s no surprise then that while life expectancy for almost every major malady is improving, patients with sickle cell disease can expect to die younger than they did 20 years ago. In 1994, life expectancy for sickle cell patients was 42 for men and 48 for women. By 2005, life expectancy had dipped to 38 for men and 42 for women.
Sickle cell disease is “a microcosm of how issues of race, ethnicity and identity come into conflict with issues of health care,” said Keith Wailoo, a professor at Princeton University who writes about the history of the disease.
It is also an example of the broader discrimination experienced by African-Americans in the medical system. Nearly a third report that they have experienced discrimination when going to the doctor, according to a poll by NPR, Robert Wood Johnson Foundation and Harvard T.H. Chan School of Public Health.
“One of the national crises in health care is the care for adult sickle cell,” said leading researcher and physician Dr. Elliott Vichinsky, who…