The patient perspective: The struggles of living with thalassemia as an adult

Abstract

AbstractToday it has become the norm for individuals diagnosed with severe forms of thalassemia who have access to hypertransfusion regimens, chelation therapy, and annual surveillance to survive well beyond childhood. However, with this improvement in prognosis and subsequent transition to adult care, it has become apparent that most adult healthcare providers, including many adult hematologists and primary care providers, are ill‐prepared to care for these patients and the complications that accompany their survival into adulthood. Collaborative efforts are needed to develop comprehensive approaches to contend with the challenges faced by adult patients to ensure they are properly managed and supported.