CIMIEA | Thalassemia Parents Society

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Blood donation process - arm with needle for transfusion

What is Thalassemia?

A medical condition requiring blood transfusions twice a month throughout life to survive.

What is Thalassemia

Thalassemia patients' red blood cells deteriorate faster than normal. It is a form of anemia that is inherited genetically from parents to children.

Symptoms

Rapid deterioration of red blood cells
Low hemoglobin levels in blood
Slow growth and health issues
Need for blood transfusions twice a month

Situation in Sri Lanka

Over 2500 patients maintained by government
About 15 main and regional thalassemia units
5% of Sri Lanka's population are carriers
10% of North Western Province are carriers

What are the Treatments for Thalassemia?

There are three treatment options for Thalassemia

Bone Marrow Transplant

The only permanent cure is through transplant. Requires a matching sibling donor. Cost in Sri Lanka is around Rs. 14 million. In India, it exceeds Rs. 20 million.

Note: 100% match is required

Blood Transfusion

The common treatment method. Blood transfusions are needed twice a month continuously throughout life.

Cost: Approximately Rs. 10 lakhs per patient annually

Gene Therapy (Zynteglo)

Gene therapy methods like Zynteglo, not yet available in Sri Lanka, can save lives even beyond age limits. Countries like Greece and Italy have conquered thalassemia using this technology.

Cost: US$ 2.8M (per patient)