A shortage of blood and stem cells in the black community is costing lives, Canada's blood agency warns.
Canadian Blood Services is calling on people of African and Caribbean heritage to register as blood and stem donors through its OneMatch Stem Cell and Marrow Network.
Sickle cell disease is an inherited disease of red blood cells, predominantly affecting people of African descent. In people with sickle cell disease, the red blood cells are abnormally shaped and starve tissues of oxygen.
The lifespan of affected people is about three decades shorter than average, said Dr. Isaac Odame, medical director of the Global Sickle Cell Disease Network at the Hospital for Sick Children in Toronto.
Complications can include infections, extreme bone pain and damage to the brain, lungs, heart and kidneys, Odame said.
Kynan Jackson, 7, of Halifax struggles with painful sickle cell disease. He takes medication twice a day, has had blood transfusions and been admitted to the hospital a few times since he was diagnosed at age four.
"It is stressful," said his mother, Winnell Jackson. "It's almost like a waiting game. The medication won't ever stop him from getting crisis again, so I know it's coming."
A stem cell transplant replaces the bad, misshapen ones with normal ones, said Odame.
"The only way to give him [Kynan] a chance is to cure it," Odame said. "We know that it can be cured through stem cell transplantation."
Stem cell transplants require a close match from a donor of the same ethnic background, which narrows Kynan's odds of getting one.
"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," Odame said.
Canada's blacks represent about 2.5 per cent of the population, based on the 2006 census. But of the 300,000 on the blood agency's stem cell and marrow registry, only 0.7 per cent are of African descent.
"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.
During Black History Month, Canadian Blood Services is appealing for young, black male donors in particular to donate blood and be registered. Men tend to be bigger and deliver a larger volume of stem cells without the complications of an over-reactive immune system that can occur during pregnancy.
Currently, the agency said there is a waiting list of 36 African Canadians with cancer who could be cured with a stem cell transplant. Kynan's mom hopes the campaign is a success and she's able to see him grow up.
It would "be really nice to know that, you know what, he does have a match out there. 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 blood agency's theme this year, "Our Canadian Story: Making Community Engagement a Priority," emphasizes community.