Narrative medicine and medical narratives: the case of Marfan syndrome

Title Narrative medicine and medical narratives: the case of Marfan syndrome Kim Grego (University of Milan, corresponding) Susanna Grego (Cardiocentro Ticino Institute, Lugano) Background. Narratives found their official way in the clinical practice of medicine starting from the late 20th century, and they have long been used successfully ever since, both by patients and by healthcare operators. The condition specifically considered is Marfan’s syndrome, a so-called rare disease (1-5 /10,000 ) which, for this very reason, is little known and may be difficult to diagnose. For the same reason, the use of descriptions of possible Marfan syndrome patients is especially relevant both for patients and for doctors looking for or perhaps ignoring a possible diagnosis. Aims and methods. This study follows a multidisciplinary approach, bringing together the doctor’s view on narrative medicine and the linguist’s view on medical narratives. It insists, in particular, on the distinction between definition and description, a concept that may appear clear to the linguist but not to the practitioner, who focuses on clinical data to fit them into a given framework. Material. For the purpose of this study, specific case studies will be analysed, starting from seminal ones from past centuries that contributed to first describing and defining the syndrome. Findings. The cases examined show how Marfan’s syndrome has, in the course of history, had the sets of variable signs characterizing it been taken as definitory and not as descriptive, hence delaying innovative prompt recognition of new cases. Relevance. The cooperation between linguistic theory and medical practice is thought to prove of help in speeding up diagnoses. Select bibliography - Dolan, B. “History, Medical Humanities and Medical Education”. Social History of Medicine 23(2), August 2010: 393-405. - Guveia, C.A.M. “Critical discourse analysis and the development of the new science”. In Weiss, G., Wodak, R. (eds) Critical Discourse Analysis: Theory and interdisciplinarity. 2003. Basingstoke: Palgrave, 47-62. - Loeys, B.L. et al., “The revised Ghent nosology for the Marfan syndrome”. J Med Genet 2010; 47: 476-485. - Schierholz, S.J., “Methods in lexicography and dictionary research”. Lexikos, 2015, 25: 323-352. - Vicentini A., Grego K., Canziani T. (2016). “A matter of terminology, when terminology matters: Naming common genetic diseases”. In G. Garzone, D. Heaney & G. Riboni (eds.), Language for specific purposes: Research and translation across cultures and media. Newcastle: Cambridge Scholars Publishing, pp. 200-218.