Sickle Cell within the At-Risk Communities

The study was carried out by Sickle Cell Awareness Group of Ontario formerly known as Seed of life Philanthropic Organization Between August 2005 and March 2007.

What is Sickle Cell Disease (SCD): It is a genetic blood disorder that affects the red blood cells. It causes the red blood cells to become hard and sickle-shaped which makes it difficult for the blood cells to travel through the small blood vessels. Normal red blood cells are round and last approximately 120 days while the red blood cells of a sickle cell patient last for only 10-20 days.

Sickle Cell Disease affects those whose ancestors are from Africa, the Caribbean, Latin America, South America, India, Asia, Middle-East& the Mediterranean.

Globally, a quarter of a million children are born with the disease each year with the majority from Africa.

With the growing number of people of African ancestry migrating and living in Canada, it is of paramount importance to understand how to reach these people along with the other ethnic groups affected by SCD.

Unlike Cancer, SCD has been treated as a minority problem. This has hampered funding that could have helped to understand why it is rampant within some cultures more than the others even in the at-risk communities and to find ways to support those living with the disease.

Very little study has been conducted if any at all on understanding these grassroots cultures.

We found that many Africans for instance, are coming from cultures where any incidence perceived negative is considered shameful by the family and to avoid shame, many will hide the perceived negative event/occurrence. For instance, for many years it was believed that a marriage producing only female children is negative and the fault is the women. Many times, such a woman would be sent packing simply for not being able to produce a male child.

Similarly, losing one’s child while one is still alive is considered a curse by the gods.

It is not surprising then to realize that having a disease such as sickle cell is unacceptable and considered shameful.

Hence, many families refused to discuss their children’s health deficiencies even with their extended family members and neighbors. This is for the fear that the children will be labeled as “soon to die” and everybody will look down at their family as “the family with the sick child”

With no support group to help and no one that understands the stress, many carry the burdens of raising sickly child/children alone.

This is the culture that many immigrants in Canada are coming from.

To be able to reach both the young and the old from these cultures, we must understand who they are, their beliefs and it is only then that we will be able to let them know that there is no shame in having SCD while educating them on the choices available to them in order to prevent more incidences of the disease.

It is important to let individuals from ethnic cultures with a high incidence of this disease understand that having genotype testing (Hemoglobin Electrophoresis) is a good way to know their sickle cell status. It will help to eliminate the ignorance and secrecy that surround this disease. Many will be more open and discussing sickle cell disease will no longer be such a taboo.

Doctors, nurses, social workers, caregivers, counselors need to understand what the challenges of the people from different ethnic groups are and hear about their experiences & thoughts in order to be able to provide care that targets total needs.