Mental health burden in rare diseases: Depression and emotional support needs in Wolfram Syndrome patients
Palavras-chave:
Mental Health, Rare Diseases, Wolfram Syndrome, Depression, Emotional SupportResumo
This article analyzes the mental health burden in patients with Wolfram Syndrome (WS), a rare neurodegenerative disorder, based on data collected by the Brazilian Association of Wolfram Syndrome (ABSW). WS is characterized by diabetes mellitus, optic atrophy, hearing loss, and neurological dysfunctions, but its psychological impact is often overlooked. Data from 25 patients show that depression is highly prevalent (12 patients), comparable to core physical symptoms. The study highlights the urgent need to integrate emotional support into clinical treatment, including mental health screening, psychological follow-up, and the inclusion of mental health professionals in multidisciplinary teams. Patient accounts, such as Fernanda’s, illustrate the emotional suffering, isolation, and lack of specialized support. The article concludes that mental health must be recognized as a clinical priority in the management of rare diseases, with the involvement of patient associations and systemic changes in care protocols.
