Beyond limitations: a qualitative inquiry into the lived experiences of adults with congenital radioulnar synostosis

PURPOSE: This study explored the lived experiences of individuals with congenital radioulnar synostosis (CRUS), focusing on how the condition effects their daily occupations from diagnosis through adulthood. MATERIALS AND METHODS: A phenomenological approach with thematic analysis was used. Eleven individuals diagnosed with CRUS, adults, participated in semi-structured Zoom interviews. They shared personal accounts about physical limitations, adaptations, and interactions with the healthcare system. RESULTS: Three central themes emerged: (1) I can't move that way-capturing the physical limitations imposed by CRUS; (2) This is my normal-reflecting the ways participants adapt and normalize their condition in everyday life; and (3) I know more than my doctor-highlighting their deep personal understanding of CRUS and challenges with medical professionals. Participants often became their own advocates due to limited professional knowledge about the condition. CONCLUSION: CRUS presents complex challenges that require tailored, client-centered care. Occupational therapy practitioners should integrate anatomical knowledge and adaptive strategies to support functional goals. A holistic, interdisciplinary approach and improved communication between patients and providers can enhance outcomes. Advocacy and awareness efforts are essential to empower individuals and promote more effective, empathetic care.