«A me non piace stare ferma, preferisco zoppicare, ma uscire»
Corporeità e (im)mobilità nei racconti di persone con anomalie vascolari rare
Abstract
This study explores embodiment and (im)mobility through the narratives of individuals with rare vascular anomalies. The focus on rare diseases highlights the challenging journey patients and their families often face to find a diagnosis and a treatment. The research examines their embodied experience of space and place, considering their shared experience of rarity as a unifying factor despite the diversity of diseases. using their shared experience of rarity as a unifying factor despite diverse illnesses. Recruitment was facilitated by La Girandola, an Italian non-profit specialised in vascular anomalies.
Presentato: 23 Dicembre 2024 | Accettato: 04 Giugno 2025 | Pubblicato 23 Settembre 2025 | Lingua: it
Keywords Mobility • Rare diseases • Embodiment • Immobility • Health mobility
Copyright © 2025 Vanessa Marchegiani. This is an open-access work distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction is permitted, provided that the original author(s) and the copyright owner(s) are credited and that the original publication is cited, in accordance with accepted academic practice. The license allows for commercial use. No use, distribution or reproduction is permitted which does not comply with these terms.
Permalink http://doi.org/10.30687/978-88-6969-951-1/005