Rare narratives in General Practice

Bernardino De Felici is a General Practitioner: he takes care, even for a long time, of people affected by pathologies also involving their families and community.

De Felici participated in the VIII edition of the Master in Applied Narrative Medicine, choosing to dedicate his project work to people with rare diseases. In particular, he presented the narrative of RD, a person affected by a rare collagen pathology, similar to Stickler syndrome.

The story embraces the woman’s whole life: from childhood, marked by the inheritance of the pathologies that characterize her family, to the challenges caused by the living with these diseases and the relations with care professionals; from attempts to receive a definitive diagnosis to questions, fears and hopes stimulated by the experience of motherhood.

An excerpt of the narrative is available in Italian.

We thank the author for her narrative and for having made her story available.

Paola Chesi

Degree in Natural Science at University of Turin, Italy. Project Manager and trainer at ISTUD – Health Care Area since 2010. Expert in health care organizational research and in the approach with Narrative Medicine, applied to national and international projects to analyse the organization and quality of pathways of care. Coordinator of training programmes ECM accredited (Continuous Medical Education system) addressed to health care professionals, as trainer and tutor. Coordinator of European projects, Lifelong Learning Programme funded, with a specific focus on storytelling. Collaboration with the Italian Society of Narrative Medicine and with international universities. Participation as speaker at several congresses promoted by scientific societies and Health Authorities.

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