Land hereditary retinal dystrophies result in progressive loss of vision and are an important cause of blindness in the pediatric setting. To better evaluate the real impact that these pathologies have on the daily life of patients and caregivers and to understand how to improve the diagnosis and treatment process, the project was created ‘Birds‘, which uses the techniques of narrative medicine. This is what is reported in an article published on Allies for Health (www.alleatiperlasalute.it), the portal dedicated to medical-scientific information created by Novartis.
From the point of view of family members, managing a child with low vision problems is very complex, both in facing the first doubts relating to his health and the difficult diagnostic process, and in having to accept this condition of diversity and progressive worsening of vision. In this context – reads the article – narrative medicine takes on an important role and takes shape within the ‘Birds’ project (The Beat of Ird Stories), created by the Istud Sanità e Salute foundation, through the narration of the experiences of patients with hereditary disease of the retina associated with the Rpe-65 gene, but also by caregivers and ophthalmologists. Each figure composes its own text following a specific narrative track, designed to help overcome the blank page block and be able to fully describe both the facts themselves and the related feelings.
The written story thus allows to bring out the emotional and social aspects associated with different moments in the patient’s life, such as the onset of the first symptoms, the beginning of living with the disease, the search, often long and tiring, for a diagnosis and its achievement. These testimonies are flanked by the points of view of doctors and caregivers, in order to highlight the main problems of the diagnostic and treatment path, drawing important ideas to trigger an improvement. Through these testimonies and the involvement within the project also of various figures of health professionals, such as psychologists, geneticists and mobility instructors, various critical issues emerged, such as the lack of knowledge of hereditary diseases, both in public opinion and in the medical field. , and the condition of low vision. There is also a need for a multidisciplinary approach to care. The complete article is available at: https://www.alleatiperlasalute.it/la-voce-del-paziente/distrofie-retiniche-ereditari-la-medicina-narrativa-capirle-e-migliorare-il-percorso-di- treatment.