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Thalassemia in Bangladesh

posted Oct 14, 2009, 11:16 PM by Thabit Pulak   [ updated Jun 25, 2011, 3:35 PM ]
We are now working on a project on helping thalassemic patients in Bangladesh to financially support themselves for treatment. According to wikipedia:

 Thalassemia major patients receive frequent blood transfusions that lead to iron overload. Iron chelation treatment is necessary to prevent iron overload damage to the internal organs in patients with Thalassemia Major. Because of recent advances in iron chelation treatments, patients with thalassemia major can live long lives if they have access to proper treatment. Popular chelators include deferoxamine and deferiprone. Of the two, deferoxamine is preferred; it is more effective and is associated with fewer side-effects.[4]

The most common complaint by patients receiving deferoxamine is that it is difficult to comply with the subcutaneous chelation treatments because they are painful and inconvenient. The oral chelator deferasirox (marketed as Exjade by Novartis) was approved for use in 2005 in some countries. It offers some hope with compliance but is very expensive (~US$100 per day) and has been associated with deaths from toxicity.

 Untreated thalassemia major eventually leads to death usually by heart failure; therefore birth screening is very important. Bone marrow transplantation is the only cure for thalassemia, and is indicated for patients with severe thalassemia major. Transplantation can eliminate a patient's dependence on transfusions. If there is no matching donor for a child with thalassemia, a savior sibling can be conceived by preimplantation genetic diagnosis (PGD) to be free of the disease as well as match the recipients human leucocyte antigen (HLA) type in order to be a donor for the sick child.

Thalassemia intermedia patients vary a lot in their treatment needs, depending on the severity of their anemia. All thalassemia patients are susceptible to health complications that involve the spleen (which is often enlarged and frequently removed) and gall stones. These complications are mostly prevalent to thalassemia major and intermedia patients.