There are as many as 5,000 Canadians who have sickle cell disease (SCD), but not many people have heard of it.
It’s for that reason that, since 2012, Humber has held an annual conference about the disease and its impacts. This year, its fifth, the theme was Sickle Cell Disease: Changing the Faces of Pain.
Earlier this month, more than 150 students in the School of Health Sciences (from the nursing, personal support worker and early childhood education programs) spent the day hearing from people who have SCD, nurses, doctors, researchers and social workers.
SCD is a group of inherited red blood cell disorders. People with the disease have abnormal hemoglobin – the protein in red blood cells that carries oxygen through the body. This lack of oxygen can cause unexpected, severe pain attacks, called pain crises, and often results in hospital stays.
SCD, which is genetic, can affect anyone. It is most often seen in people from Africa, the Mediterranean, Caribbean, Middle East, Southeast Asia, Western Pacific Region, South America and Central America.
“I learned so much about (SCD),” says Maria De Souza Monteiro, a first-year practical nursing student. “(Hearing from) the speakers who have the disease was amazing, because they shared a personal point of view about the disease. It was good to hear from them about how they deal with the pain … and also how they are perceived by others. I leaned that pain is not always shown on the face, especially on the faces of those who suffer excruciating pain all the time.
“It is essential to know about (SCD) and how to treat it,” she continues, explaining why going to the conference was useful. “Also, listen to your patient, because pain is subjective. They might not show signs of pain … but know that sickle cell disease can cause a lot of pain.”