About
The RBCD Hub is a space to connect about Sickle Cell Disease, Thalassemia, and other Hemoglobinopathies in Ontario. This Hub also hosts the Official Blog of the University Health Network’s RBCD Clinic.
THE RBCD HUB // ABOUT
Why a Hub?
We want to share information relevant to the RBCD community. Our Hub’s goals include:
Increase awareness of Sickle Cell Disease, Thalassemia, and other Red Blood Cell Disorders
Combat stigma and oppression
Share knowledge and resources
Deliver meaningful stories within a social justice framework
Empower the voice of people with RBCDs
Partner with communities
No material on this site is intended to be a substitute for professional medical advice, diagnosis, treatment or care. If you have a health or mental health emergency, please call 911 or the number for emergency service in your area or go directly to a hospital emergency department near you.
What are Red Blood Cell Disorders?
Red Blood Cell Disorders are genetic conditions which affect red blood cells. This means people are born with these disorders due to the genes passed down from their parents. Sickle Cell Disease and Thalassemia are two major groups of red blood disorders. There are also other rarer disorders, including Diamond Blackfan Anemia, hereditary spherocytosis, and many others.
As genetic illnesses, Sickle Cell Disease and Thalassemia can affect anyone, regardless of race or ethnicity. They are commonly diagnosed in people whose ancestors are from Africa, the Caribbean, China, Latin America, the Middle East, South Asia, Southeast Asia, and the Mediterranean. Sickle Cell Disease and Thalassemia are among the world's most common genetic conditions
Sickle Cell Disease
Under certain stressful conditions, the red blood cells of people with Sickle Cell Disease become crescent-shaped. These ‘sickled’ cells cause blood flow blockage in vessels, which causes both chronic and acute pain and other complications throughout the body. Sickle cell pain episodes, also known as pain crises, are a hallmark feature of the illness. Sometimes, people can manage crises at home. Other times, these crises are medical emergencies that require hospital care. However, Sickle Cell Disease is not just about pain. Over time, this disease can damage many body organs, including the eyes, brain, bones, heart, lungs, and kidneys.
Thalassemia
People with Thalassemia are unable to produce sufficient hemoglobin. Those with the most severe forms of Thalassemia require lifelong blood transfusions every three to four weeks. While life-sustaining, transfusions also deposit iron in the body. Iron can accumulate to dangerous levels in organs, such as the heart and liver in the body, which can result in organ damage and endocrine problems.
Have an Idea for the Blog?
We would love to hear and support your idea! We invite patients of the University Health Network’s Red Blood Cell Disorders Clinic to participate in developing Blog content. You can speak with any member of your RBCD care team to get connected.