African-Canadians urged: Save lives from sickle-cell anemia, donate blood, stem cells. It’s a disease that can cause sudden episodes of extreme pain. Often, only powerful, addictive painkillers can help relieve the pain. It’s chromic and untreatable, slashing the life expectancies of sufferers by 30 years. It demands comprehensive management, straining the resources and energy of families of children who suffer from it.
It’s sickle cell anemia, the potentially fatal inherited disease of the red blood cells that predominantly affects people of African, South American or Caribbean descent.
People with sickle cell disease have red blood cells, abnormally shaped like crescents or sickles, which starve tissues of oxygen. Unable to carry oxygen properly throughout the body, red blood cells also tend to clump together, blocking blood flow, damaging organ—and causing severe pain.
“With a sickle cell crisis, there’s a lot of pain, unbelievable pain. It’s like a jackhammer on your back, basically,” long-term sufferer Andre Hinckson, 38, of Queens, New York tells The New York Times in a March 2011 feature.
The most common genetic disorder in the United States, it affects about 90,000 Americans.
One out of every 500 African-American persons in the U.S., one in 600 people of African descent in Canada, and one in every 2,000 persons in the United Kingdom is born with this condition. It’s also a major health problem in France, with in-migration of people from Africa leading to rising incidence of the dreaded disease.
But three-quarters of sickle-cell cases occur in Africa, according to the World Health Organization, which also estimates that around two percent of newborns in Nigeria—or 150,000 children born every year—are born with sickle cell anemia.
Across equatorial Africa, between 10 percent to and 40 percent of people are carriers of the gene that causes sickle-cell anemia, and this decreases one percent to two percent on the north African coast and less than one percent in South Africa.
But not only people of African descent are affected. Sickle-cell anemia is also common in people with roots in South or Central America, the Caribbean islands, India, Saudi Arabia and some Mediterranean countries.
Stem cell transplant can save lives
“The lifespan of affected people is about three decades shorter than average,” says Dr. Isaac Odame, medical director of the Global Sickle Cell Disease Network at the Hospital for Sick Children in Toronto, Canada.
“Complications can include infections, extreme bone pain and damage to the brain, lungs, heart and kidneys,” Dr. Odame adds.
By replacing the dangerous red blood cells with regular ones, a stem cell transplant can cure sickle cell disease. But stem cell transplants require an accurate match from a donor of the same ethnic background.
Celebrate Black History month by saving lives
Currently, however, donor registries are lacking enough donors of African and Caribbean descent—and that’s costing lives, Canada’s blood agency warns.
The Canadian Blood Services is calling on Canadians of African and Caribbean heritage to celebrate Black History month by registering as blood and stem cell donors through its One Match Stem Cell and Marrow Network.
Based on the 2006 census, Canada’s blacks represent about 2.5 percent of the population. But only 0.7 percent of the 300,000 on the blood agency’s stem cell and marrow registry are people of African descent.
Right now, there’s a waiting list of 36 African Canadians with cancer who could be cured with a stem cell transplant, the Canadian blood agency says, appealing in particular to young, black male donors to donate blood and register.
Because men tend to be bigger, a larger volume of stem cells can usually be obtained—and without the complications of an over-reactive immune system that can occur in women, during pregnancy.
“If you are Caucasian and you’re looking for an unrelated match, probably 75 per cent chance you will find one. If you are of African descent, your odds are far, far, far less,” Dr. Odame tells CBS News.
“Sometimes people wait six months to years to find a match and they may end up passing away in that time period because we can’t find a match in Canada or around the world,” said Sue Smith, executive director of One Match.
The CBS News report also featured a slice of the life on Kynan Jackson, 7, of Halifax, who struggles with the painful disease. Since he was diagnosed at age four, he takes medication twice a day, has had blood transfusions and has been admitted to the hospital a few times.
“It’s stressful,” says his mother, Winnell Jackson. “The medication won’t ever stop him from getting crisis again, so I know it’s coming.”
It would “be really nice to know that…there’s somebody out there wherever they may be, that would match him and be able to take that pain, help ease that pain in his life.”
The gene for sickle-cell is common in Africa because it confers some resistance to malaria during a critical period of early childhood—increasing the chances that a child will survive an attack. But while a single abnormal gene may protect against malaria, inheritance of two abnormal genes leads to sickle-cell anemia—and confers no such protection. In Africa, Malaria is a major cause of ill-health and death in children with sickle-cell anemia.
Sickle cell anemia can be managed, but even with diligent care, the challenges of living with the disease are great.
“The only way to give him [Kynan] a chance is to cure it,” says Dr. Odame says. “We know that it can be cured through stem cell transplantation.”