About one in every 500 African Americans is born with sickle cell disease and advocates for a cure said those who suffer from the condition face stigmas due to a lack of understanding.
“It’s amazing how few people know about it, even in this country,” said Dr. Barbara Barnett, an internist at the Long Island Jewish Medical Center in New Hyde Park. “There has not been a lot of funding for the disease. I think it’s definitely because of the population it affects.”
Sickle cells, the doctor explained, developed in African areas as the body’s natural defense against malaria. Normal red blood cells are shaped like a disk with a recess, but sickled red blood cells are crescent shaped, which not only inhibits malaria but also prevents the cells from delivering as much oxygen to the body as they should.
Those afflicted with the disease describe suffering from excruciating, unpredictable pain.
Erica Bell, 29, was diagnosed with the disease when she was 2 months old.
“There are a lot of things you can’t do,” Bell said Sunday at a rally for sickle cell awareness in Roy Wilkins Park. “But I am hopeful. I’m grateful for every day.”
Bell’s experiences with the disease were similar to those shared by others at the park during an event organized by the Queens Sickle Cell Advocacy Network. Stories about experiencing debilitating pain, stays in the hospital for blood transfusions and reliance on strong narcotics to ease their suffering were told again and again, as were affirmations that those who have the disease never take a single day for granted.
Life expectancy now for someone with sickle cell disease is in the 50s, but many who were diagnosed 10, 20 or 30 years ago were told they would not make it past childhood.
Gloria Rochester, the founder of the network, did not know anything about sickle cell disease in 1973 when her 18-month-old daughter was diagnosed, let alone that both she and her husband carried the trait.
“I had to learn, to educate myself. In the ’70s there were very few resources,” she said. “I went to the library and I spoke with other parents about how to cope.”
Rochester said she had to teach herself how to deal with a child in extreme pain, how to help her daughter through school and find a job and how to fight a negative stigma attached to African Americans who rely on strong narcotics in their daily lives.
Rochester’s daughter is now 38 with three children of her own, and she has benefited from the knowledge her mother has gained and continues to pass on to the community.
“I had to tell her, ‘Don’t marry someone with sickle cell.’ You want to break the cycle of sickle cell. The most important thing is to know your status,” she said.
QSCAN hosts a parent support group on the first Monday of every month at 7 p.m. in its Queens Village office, at 207-08 Hollis Ave. For more information, call 718-712-0873.
Reach reporter Rich Bockmann by e-mail at firstname.lastname@example.org or by phone at 718-260-4574.
©2012 Community News Group
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