A National Framework For Sickle Cell Disease Is Crucial
Patient Perspective An estimated 5000 Canadians are living with sickle cell disease, and although the incidence varies among provinces, up to 1 in every 2500 babies will be born with it.
Adeniyi Omishore is a sixteen-year-old who wants to go to school, study for tests, play soccer or basketball and go out with his friends. He is not able to do these activities or even run from his home to the convenience store because he has avascular necrosis (AVN) of the hip which is one of the many common complications of sickle cell disease. Adeniyi has to be transported to and from school and uses a walker to move around.
“This disease is very limiting and many on the street look at me weirdly. They are surprised to see a sixteen-year-old using a walker, taking one slow step at a time. Some kids in school even make fun of me, but I am pleased to have great friends around me.
I was born with a genetic blood disorder, sickle cell disease, which makes my red blood cells assume a sickle shape. The abnormal shape of my red blood cells has caused constant debilitating pain all over my body and practically destroyed my hip bones. Hip replacement was recommended for me since I was thirteen” says Adeniyi.
From impairment to improvement
“Having sickle cell disease has greatly impaired my life. In addition to health complications, it has produced a level of stress that goes beyond most people’s imagination. When I am sick, I worry about my school work and the many school assignments piling up. Stressing about the school assignments and the missed classes gets me sick and the cycle is unending. I am always in and out of the hospital.
“...even though I struggle daily with these complications, it is important to acknowledge that new treatments are emerging every day.”
However, even though I struggle daily with these complications, it is important to acknowledge that new treatments are emerging every day. But more research is still needed.”
According to Lanre Tunji-Ajayi, President and CEO of the Sickle Cell Disease Association of Canada (SCDAC), sickle cell was first characterized as a disease in America in 1910. Over a century later, there is still minimal awareness around this condition in Canada. The world recently concluded celebration of World Sickle Cell Day on June 19th. It is essential that Canada recognizes June 19th as the National Sickle Cell Awareness Day. By raising awareness, ongoing social and political pressure can be maintained towards achieving the desperately needed goal of establishing a national sickle cell disease strategy.
Developing a national strategy
There are already an estimated 5,000 individuals living with the disease in Canada, with over a hundred new cases born every year to the many parents who still don’t realize they are carriers of the trait. A pan-Canadian framework is very much needed for sickle cell disease, which is now recognized as the most common genetic condition in the world and one that in Canada, is more common than conditions such as cystic fibrosis and hemophilia. Development of a national strategy will decrease the suffering of those born with the condition; decrease the number of new cases born to at-risk parents, and save significant costs to the healthcare system.