"I would love to talk to someone that actually understands": Psychosocial experiences of adults with Fanconi anemia.

This article focuses on the psychosocial experiences of adults living with Fanconi Anemia (FA), a rare genetic disorder characterized by bone marrow failure and increased cancer risk. Through qualitative interviews with 18 diverse adults with FA, five key themes emerged: the all-encompassing and unpredictable nature of FA, the significant impact of stigma and healthcare-related trauma on mental health, bittersweet connections within the FA community, barriers to accessing knowledgeable and culturally concordant mental healthcare, and a process of acceptance involving coping strategies and resilience. The study highlights critical gaps in mental health support for adults with FA, emphasizing the need for improved provider education, accessible community support—especially for minorities and non-Western individuals—and comprehensive, whole-person care approaches.