Living with Primary Immunodeficiencies: The Psychiatrist’s Perspective

Psychiatric manifestations are increasingly recognized as an integral component of many inborn errors of immunity (IEI), resulting from the complex interplay between immune dysregulation, chronic inflammation, recurrent infections, genetic factors, and the psychosocial burden of living with a lifelong disease. Anxiety, depression, sleep disturbances, and reduced quality of life are common yet frequently underrecognized, while some patients may present with primary neuropsychiatric manifestations requiring specialized psychiatric care. This patient-centered session will explore the psychiatric aspects of IEI from both clinical and patient perspectives. The discussion will address the early recognition of mental health disorders, the impact of chronic illness on patients’ beliefs, emotional well-being, behavioral patterns, motivational functioning, and overall daily functioning, as well as strategies to improve communication between patients and healthcare professionals and to facilitate the integration of psychiatric assessment into routine multidisciplinary care. Special attention will be given to the challenges associated with adolescence and transition to adult care, treatment adherence, the psychological consequences of delayed diagnosis, social limitations, and stigma. The session will also examine the potential neuroimmune mechanisms underlying psychiatric symptoms and discuss how psychopharmacological and psychotherapeutic interventions can be safely integrated into the management of patients with complex immune disorders. Through interactive discussion and active patient participation, the session aims to promote a better understanding of mental health as an essential component of comprehensive IEI care. By fostering collaboration among immunologists, psychiatrists, psychologists, and patient representatives, participants will gain practical insights into recognizing psychiatric comorbidities, strengthening patient-centered communication, and developing holistic management strategies that address both physical and mental health outcomes.