By Dr. CHRISTOPHER J. MORGAN
The nineteenth of June every year has been designated as World Sickle Cell Day by the World Health Organization (WHO). According to WHO, approximately 5 per cent of the world’s population are healthy carriers of a gene for sickle-cell disease or thalassaemia. These conditions are prevalent in tropical regions, however population migration has spread these diseases to most countries.
In Canada, Ontario has the largest number of carriers and individuals living with Sickle Cell Disease (SCD) with approximately 57.1 per cent of all carriers. Some immigrants to Ontario come from African countries with higher than 25 per cent of their population as carriers and others from countries with 12 per cent – 15 per cent carrier status. According to 2006 statistics, close to 110,000 Black people in Ontario are carriers. However, this is an under-representation considering 653,000 new immigrants came to Ontario between 2006-2011, approximately 70 per cent were from Asia, the Middle East or Africa, where sickle cell disease and thalassaemia are endemic.
Sickle-cell disease is characterized by a modification in the shape of the red blood cell from a smooth, donut shape into a crescent or half-moon. The misshapen cells lack plasticity (flexibility) and can block small blood vessels, impairing blood flow. This condition leads to shortened red blood cell life, and subsequent anaemia, often called sickle-cell anaemia. Poor blood oxygen levels and blood vessel blockages in people with sickle-cell disease can lead to chronic acute pain syndromes, severe bacterial infections, and necrosis (tissue death).
You probably know someone living with SCD; they may be a child, a teenager or an adult. From time to time they may experience periods of intense bodily pain requiring immediate and appropriate medical attention. Living and coping with the effects of sickle cell disease presents several challenges in every area of life. Yet, despite the difficult and often painful periods of life, I personally know several people living with sickle disease and I am truly inspired by their spirit, zest for life and resilience.
Over the last two decades in Ontario there has been a growing movement among non-profit and charitable organizations, health professionals and community members to improve sickle cell education and awareness within the community and among health professionals. Key objectives of the movement include raising awareness for caring for people with SCD, including adults, providing support for families and advocating for system-wide advancements that will ultimately improve the quality of life for people living with SCD.
Organizations such as the Sickle Cell Association of Ontario, established in 1981, led the charge advocating for sickle cell anemia to be included in Ontario’s new born screening program. That milestone was realized in 2006. Since then about 60 newborn babies are identified in Ontario with full blown SCD each year, and this number is expected to rise.
This year marks the 20th Anniversary for Camp Jumoke, Canada’s only summer camp catering exclusively to children 8 to 15 years of age with sickle cell disease. The camp is staffed with experienced medical professionals and volunteers who organize a full adventure for one or two weeks, providing a memorable camp experience for the children.
The Sickle Cell Awareness Group of Ontario, along with its partners, has been working to see the passing of Ontario Bill 175 – an Act to establish Sickle Cell and Thalassemia Care Ontario and to proclaim Sickle Cell and Thalassemia Awareness Day – and National Bill C221 – an Act respecting a comprehensive national strategy for sickle cell and thalassemia disorders. Unfortunately these Bills have not become law – yet. They were introduced and supported by MPP Mike Colle and MP Kristy Duncan, respectively.
TAIBU Community Health Centre, which emerged from the efforts of the Black Health Alliance, is committed to providing primary health care services to the Black community in the GTA as its priority population, and has developed a partnership with a key Scarborough-based hospital to improve, among other things, care between the community and the hospital for people with SCD.
Each one of us can play a role and become better informed about sickle cell disease. Today, why not celebrate World Sickle Cell Day with the TAIBU Community Health Centre Sickle Cell Self-Help Support Group, which is organizing an afternoon of sickle cell awareness, screening, and edutainment activities between 4 p.m. – 7 p.m. Call 416-644-3539 extension 226 for more info or visit www.taibuchc.com.
Attend “The Sickle Cell Association of Ontario’s World Sickle Cell Day Conference: Straight Talk on Sickle Cell”, on Saturday, June 21, 11 a.m. – 6 p.m. at the Yorkdale Holiday Inn. For more information, call 416-789-2855 or visit www.sicklecellontario.org. The association is also holding its Annual General Meeting on Wednesday, June 25 at Metro Hall at 6 p.m. during which the association’s founder, Order of Ontario recipient and community stalwart at age 92, Lillie Johnson, will be presented with the Pioneer Award.
There are other organizations, individuals and supporters that make up the sickle cell family. Much has been done and accomplished and yet there is so much more to be done. Together, working in partnership and in unity, community and government, we can advance the health and well-being of the Black community.
September is Sickle Cell Month, all of these groups will likely be organizing activities and opportunities to further engage our community and institutions about sickle cell disease.
Dr. Christopher J. Morgan is the director of Morgan Chiropractic & Wellness, an interdisciplinary health centre in Toronto, and the President of the Black Health Alliance, a network of community organizations, health professionals and community members working in partnership to advance the health and well-being of the Black community.