August 12, 2011
Once considered a death sentence, sickle cell disease has had a promising medical breakthrough.
ESSENCE reports on the cure researchers have been waiting for, dangerous myths associated with the disease and the risks of just being a carrier.
Lucky Mulumba was at home, holding her 3-week-old baby girl Carol in her arms when the news came. It was a registered letter from the hospital: Carol has sickle cell disease. "I read it four times," says Mulumba, a U.S. Air Force captain and nurse in Fairfield, California. "I couldn't stop crying." Growing up in Uganda, Mulumba had witnessed many children tormented by the disease. "I thought, how could God do this?"
Her fears were understandable. Predominantly affecting Blacks, sickle cell disease causes the body to produce sticky crescent-shaped (rather than circular) blood cells that inhibit the life-sustaining flow of oxygen through one's blood vessels. At one time, children with the disease seldom lived past their teens, and their lives were plagued with chronic pain, deadly infections, kidney disease and even stroke.
It was a reality Lucky and her husband, Abdullah, also a nurse, were not prepared for. They hadn't realized they both carried the trait, which meant their baby had a 25% chance of getting the disease.
That letter was the beginning of the family's anguish. Whenever Carol got a fever, it resulted in weeklong hospital stays and unrelenting pain. "My head felt like someone kicked it," recalls Carol, now 10. "My stomach was like someone punched it. My foot felt like it was under a rock and my heart felt like it was squeezed." Watching their daughter suffer, Lucky did not plan on more children - but her birth control failed and she learned she was pregnant again when Carol was 2. "I would go in the bathroom and just cry all the time," she says. "Then one day my husband said, 'Just leave everything to God.' And you know, that was the child who saved Carol's life."