The RBCD Hub Celebrates Sickle Cell Awareness Day
Photo by Mark Mathosian
June 19th is Sickle Cell Awareness Day – a day to increase knowledge of Sickle Cell Disease as well as provide support to impacted people. This blog post brings awareness and is dedicated to people with Sickle Cell Disease in Ontario!
An Inherited Red Blood Cell Disorder
An inherited red blood cell disorder, the red blood cells of people with Sickle Cell Disease become crescent-shaped under stressful conditions. These ‘sickled’ cells cause a range of complications, including intense pain crises – a hallmark feature of Sickle Cell Disease. Some crises can be managed at home while others are medical emergencies. However, Sickle Cell Disease is not only about pain: over time, Sickle Cell Disease can damage organs, including the eyes, brain, bones, heart, lungs, and kidneys. People with Sickle Cell Disease therefore require care throughout the healthcare system.
Anti-Black Racism and Sickle Cell Disease
In Canada, Sickle Cell Disease disproportionately impacts Black communities, who face anti-Black racism – a distinct form of discrimination, rooted in the colonization and enslavement of African peoples. Ontario Health’s SCD Quality Standard affirms that Anti-Black racism is REAL and causes health disparities for people with Sickle Cell Disease. For example, many people with Sickle Cell Disease are frequently subject to ‘drug seeking’ and other stereotypes rooted in anti-Black racism when seeking medical care.
The Anti-Racism & Anti-Black Racism policy commits the University Health Network to understanding the histories of systemic racism and discrimination that results in unequal access for Black, Indigenous, and racialized peoples. There is much work to be done to bring these progressive policies to life.
Resilience Across the Life Course
Managing complex medical care, coping with symptoms and complications, and balancing school, work, family, friends, and relationships can be challenging for anyone – and even more so for those with a chronic and serious condition. It is important to remember that people with Sickle Cell Disease have resilience. In the face of adversity, people with Sickle Cell Disease have developed unique support systems, skills, abilities, values, dreams, interests, coping strategies, and commitments to live full lives with their condition.
Increasing Awareness
Check out the following RBCD Hub Blog posts that centre on the lives of people with Sickle Cell Disease:
My Sickle Cell Disease Warrior, Blood Moon: Cosplaying to Cope by Isata
Down with Capitalism! How to take Better Care of Yourself while living with Sickle Cell Disease by Bethany Morris
Grabbing the Bull by the Horns: Why Human Rights Matter for Sickle Cell Disease by Oluwayemisi Abatan, Sinthu Srikanthan, and Brendan Jowett
Silent Warrior, Beautiful Warrior by Josephine Fosuwaa
Counter-Storytelling for Social Change - Part 1: The Black Panther Party by Vanessa Ferguson
Counter-Storytelling for Social Change - Part 2: Miss Lillie Johnson by Sinthu Srikanthan & Vanessa Ferguson
Sickle Cell Disease and Mental Health: Tips for Coping with the Physical and Emotional Challenges of a Chronic Condition by Ola Iyanda
Managing Sickle Cell and your Menstrual Cycle by Bethany Morris
UHN Health Talks: Sickle Cell Disease by Colleen Johnson, Bethany Morris, and Sinthu Srikanthan
Flying Safely as an Adult with Sickle Cell Disease by Colleen Johnson and Dr. Richard Ward
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