The RBCD Hub Celebrates Thalassemia Awareness Day!
Photo by Marco Verch
May 8th is Thalassemia Awareness Day – a day dedicated to increase knowledge and awareness of Thalassemia as well as to provide support for impacted peoples. This blog post brings awareness and is dedicated to people with Thalassemia in Ontario!
Thalatta! Thalatta!
‘Thalassemia’ has its origins in Greek literature. The American physician, Dr. George Hoyt Whipple, recalled the Greek epic, Anabasis, to name this red blood cell disorder. As the story goes, in 401 BC, Xenophon's 10,000-strong army were on a long and exhausting journey home after war. Mistaking the Black Sea for their Mediterranean homeland, the soldiers shouted with joy, “Thalatta! Thalatta!” (The Sea! The Sea!)
Drawing inspiration from this epic, Dr. Whipple joined the Greek words, thalassa, for ‘the sea,’ and haima, for ‘blood,’ to name Thalassemia.
An Inherited Red Blood Cell Disorder
An inherited red blood cell disorder, 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. Today, iron build up is managed by taking medications known as chelation therapy.
Thalassemia is commonly diagnosed in peoples whose ancestors are from parts of the world where malaria was or is still endemic, including Africa, Asia, South Asia, the Middle East, and the Mediterranean. In Canada, Thalassemia frequently impacts people from newcomer communities; however, as a genetic disease, Thalassemia can impact all people, regardless of background.
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 such as Thalassemia. It is important to remember that people with Thalassemia also have resilience, developing social support systems, skills, abilities, values, dreams, interests, coping strategies, and commitments across the life course 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 Thalassemia:
The Accessibility Office and the Red Blood Cell Disorders: Reflections from an Accessibility Counsellor living with Thalassemia by Kathy Raufi
Top 5 Things to do During Transfusion by Shirin Taki
Key Traits of People with Thalassemia that make them Great Corporate Professionals by Pratip Aditya
Learn More
Read the Thalassemia International Federation’s page on International Thalassemia Day
Check out the Centers for Disease Control and Prevention’s page on Real Stories from People Living with Thalassemia
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