Thalassemia: A Review of the Challenges to the Families and Caregivers

Cureus. 2022 Dec 13;14(12):e32491. doi: 10.7759/cureus.32491. eCollection 2022 Dec.

Abstract

Thalassemias are a group of congenital hemoglobin (Hb) disorders distinguished by dwindling or total curtailment of production of one or more globin chains of hemoglobin tetramers, ensuing in unrestrained destruction of red blood cells (RBC) that causes severe anemia. The severity of the disease often remains immensely variable. Children with thalassemia suffer from the disease's consequences and treatment complications. The disease also causes a negative impact on family members, who suffer mentally, socially, financially, and even physically. In this review, we highlight the challenges experienced by the family and caregivers; for instance, repeated blood transfusion as the dominant origin of tissue casualty, morbidity, and fatal clinical outcomes. Treatment modalities regarding thalassemias were not successful until the inception of bone marrow transplantation and gene therapy.

Keywords: congenital autosomal recessive infirmity; financial burden; hemoglobin; hereditary hemoglobinopathies; homozygotes; parental stress; progressive severe anemia; red blood cells; thalassemia; β-thalassemia.

Publication types

  • Review