The Sickle Cell Awareness Group of Ontario (SCAGO) will celebrate Sickle Cell Awareness Month with a series of educational and awareness-raising activities, amplifying the voices of those living with sickle cell disease. The Theme for this year is “The Lesser Told Stories of siblings with Sickle Cell Disease”.
Sickle Cell Awareness Month 2022 follows the historic passing of Bill 255 on June 3, 2021, officially declaring June 19th as Sickle Cell Awareness Day in Ontario. It was a monumental step in the fight to raise more awareness.
Raising sickle cell disease awareness is crucial as people living with the disease, who are predominantly of African, Caribbean, Middle Eastern, Mediterranean, and Indian descent, often face discrimination in addition to the challenges of living with this debilitating disease.
Sickle cell disease is an inherited blood cell disorder that impacts the daily lives of approximately 4000 Ontarians. It causes acute and chronic severe pain, resulting in regular trips to the emergency department, and can lead to fatal complications including damage to vital organs and premature death.
Education about the disease is still limited, which makes Sickle Cell Awareness Month an important part of forging a path to greater equity for sickle cell patients who are sometimes overlooked and stigmatized by medical professionals.
How to Celebrate Sickle Cell Awareness Month with SCAGO
Share our sickle cell fact sheet to help educate others about sickle cell disease.
Attend one of our upcoming events.
Use our official Facebook photo frame to help raise awareness.
Share your #SCDStory with us by emailing media@sicklecellanemia.ca. We’ll be highlighting the stories of SCD warriors, family members, and caregivers throughout the month.
Connect with us on social media and use the hashtags #SickleCellAwarenessMonth and #SCAGO.
In Canada, systemic racism has always been very real as individuals with sickle cell disease presenting in Canadian hospitals with vaso-occlusive crisis (painful episode representing the hallmark of the disease) are often treated as drug seekers compared to their non-racialized counterparts presenting with pain. According to PM Justin Trudeau in a statement issued on June 2nd, 2020, “Black Canadians and racialized Canadians face discrimination as a lived reality every single day. There is systemic discrimination in Canada, which means our systems treat Canadians of colour, Canadians who are racialized, differently than they do others.”
The History of Sickle Cell Awareness Month
Dating back to 1975, the United States of America was the first country to observe September as Sickle Cell Awareness Month, though many more countries now recognize September as the Sickle Cell Awareness Month.
In Canada, even though September is not enacted as the Sickle Cell Awareness Month, many SCD organizations including the Sickle Cell Awareness Group of Ontario (SCAGO) utilize the month to raise the profile of the disease.
To celebrate, SCAGO has previously organized action days at Queens’ Park which has helped to improve disease visibility among Ontario policymakers
The organization also rolls out knowledge translation educational activities among care providers to improve their disease knowledge and reduce stigma and systemic racism experienced by affected individuals seeking medical care in Ontario hospitals.
Furthermore, through its disease management mechanism, SCAGO has taken advantage of the awareness month to improve the disease management skill sets of individuals, their families, and caregivers with SCD disease. Over the years, this has resulted in improved physical and mental health well-being.