Patients With Thalassemia No Longer Dealt A Death Sentence
Education and Advocacy The blood disease Thalassemia is affecting a growing number of Canadians, but its treatment options needs more awareness.
The emerging prevalence in Canada of the blood disorder thalassemia requires awareness of treatment options so patients can live healthy lives.
Dr. Jacob Pendergrast says the genetic blood disease thalassemia is affecting a growing number of Canadians.
Thalassemia used to be confined to parts of the world where malaria was common, but changing immigration patterns are helping the disease see a growing prevalence amongst Canadians.
Dr. Pendergrast, an assistant professor at the University of Toronto and attending hematologist in the University Health Network’s Red Blood Cell Disorders Program, says a new strategy for care is critical.
“We really need to come up with a national, comprehensive care strategy for these patients instead of treating it like an orphan disease,” he says.
People born with thalassemia can’t produce the normal hemoglobin they need to produce healthy red blood cells. While carriers of thalassemia minor have no or only slight anemia, those with thalassemia major have a life-long dependence on blood transfusions. It is often only after a child is born with thalassemia major that the parents realize they were both carriers of the condition.
Dr. Pendergrast says that evolving strategies to manage transfusional iron overload, and to safely achieve a cure through bone marrow transplantation and gene therapy, will help improve patient quality of life going forward.
Helen Ziavras, president of the Thalassemia Foundation of Canada, was born in the 60s and diagnosed with thalassemia just before her first birthday.
“Back then, my parents were not aware of this disease and were told that I wouldn’t live to see my 18th birthday,” she says.
Today Ziavras heads the national organization that supports and funds thalassemia research, treatment, and public awareness.
She says the biggest misconception the public has about thalassemia is that it’s a childhood disease and that you can’t live a normal life doing things like playing sports, working full time, and having kids. Ziavras, a mother herself, is living proof that outcomes have changed significantly for patients.
She says the most significant development is that thalassemia is now seen as treatable instead of being considered a death sentence.
“Despite the challenges that thalassemia patients continue to face, when they receive optimal treatment many can persevere, thrive and follow their dreams.”
To learn more, visit thalassemia.ca.