A State of Flux

On Bleeding

Roberto Brigati, Daniela Crocetti

Research output: Contribution to journalArticle

Abstract

There are few non-medical reflections on haemophilia and chronic bleeding disorders (CBDs), and what there is often turn out to be wrong, outdated, or fanciful. CBDs are often hidden experiences, aside from the lack of treatment in literature, academic or not. This article re-frames CBDs through a philosophical, yet subjective, treatment that seeks to describe it as a cluster of experiences that often step outside of the bounds of the medical definition. Why have CBDs been so elusive? Partly because of their multi-layered, temporally structured, socially organized ontology, which makes them hard to define, locate, and reduce to one clear-cut perspective. Are they in the genes, in actual bleedings, in secondary disabilities, in the social adjustments involved, in iatrogenic complications; or are they to be located in the joints, the liver, or other organs that may be affected as a consequence of treatments? Do they affect individuals, families, genetic carriers, sexual partners, or even future generations? Drawing partly upon personal history, conversations, semi-structured interviews, published biographical narrations, and the shared experience of patients’ groups, the article amends some misinterpretations and captures salient aspects of this illness experience.
Original languageEnglish
Pages (from-to)305-322
Number of pages18
JournalJournal of Literary & Cultural Disability Studies
Volume10
Issue number3
DOIs
Publication statusPublished - 1 Oct 2016
Externally publishedYes

Fingerprint

Hemorrhage
experience
social adjustment
Narration
narration
Social Adjustment
ontology
Sexual Partners
Social Responsibility
Hemophilia A
Heterozygote
conversation
illness
disability
Therapeutics
Joints
lack
Interviews
interview
Liver

Cite this

@article{273fd334bfbf4b16b9f6cca1e4cf1220,
title = "A State of Flux: On Bleeding",
abstract = "There are few non-medical reflections on haemophilia and chronic bleeding disorders (CBDs), and what there is often turn out to be wrong, outdated, or fanciful. CBDs are often hidden experiences, aside from the lack of treatment in literature, academic or not. This article re-frames CBDs through a philosophical, yet subjective, treatment that seeks to describe it as a cluster of experiences that often step outside of the bounds of the medical definition. Why have CBDs been so elusive? Partly because of their multi-layered, temporally structured, socially organized ontology, which makes them hard to define, locate, and reduce to one clear-cut perspective. Are they in the genes, in actual bleedings, in secondary disabilities, in the social adjustments involved, in iatrogenic complications; or are they to be located in the joints, the liver, or other organs that may be affected as a consequence of treatments? Do they affect individuals, families, genetic carriers, sexual partners, or even future generations? Drawing partly upon personal history, conversations, semi-structured interviews, published biographical narrations, and the shared experience of patients’ groups, the article amends some misinterpretations and captures salient aspects of this illness experience.",
keywords = "Haemophilia, Chronic bleeding disorders, Patient experience",
author = "Roberto Brigati and Daniela Crocetti",
note = "Metadata checked - JC; 17/08/17 No full text in Eprints. Can't find any clear information on copyright and usage. Get sent to another website which you have to put in a request'Requests to reuse content from Liverpool University Press are now being processed through PLSclear. Please visit www.plsclear.com to complete your request.'. HN 07/11/2017",
year = "2016",
month = "10",
day = "1",
doi = "10.3828/jlcds.2016.26",
language = "English",
volume = "10",
pages = "305--322",
journal = "Journal of Literary and Cultural Disability Studies",
issn = "1757-6458",
publisher = "Liverpool University Press",
number = "3",

}

A State of Flux : On Bleeding. / Brigati, Roberto; Crocetti, Daniela.

In: Journal of Literary & Cultural Disability Studies, Vol. 10, No. 3, 01.10.2016, p. 305-322.

Research output: Contribution to journalArticle

TY - JOUR

T1 - A State of Flux

T2 - On Bleeding

AU - Brigati, Roberto

AU - Crocetti, Daniela

N1 - Metadata checked - JC; 17/08/17 No full text in Eprints. Can't find any clear information on copyright and usage. Get sent to another website which you have to put in a request'Requests to reuse content from Liverpool University Press are now being processed through PLSclear. Please visit www.plsclear.com to complete your request.'. HN 07/11/2017

PY - 2016/10/1

Y1 - 2016/10/1

N2 - There are few non-medical reflections on haemophilia and chronic bleeding disorders (CBDs), and what there is often turn out to be wrong, outdated, or fanciful. CBDs are often hidden experiences, aside from the lack of treatment in literature, academic or not. This article re-frames CBDs through a philosophical, yet subjective, treatment that seeks to describe it as a cluster of experiences that often step outside of the bounds of the medical definition. Why have CBDs been so elusive? Partly because of their multi-layered, temporally structured, socially organized ontology, which makes them hard to define, locate, and reduce to one clear-cut perspective. Are they in the genes, in actual bleedings, in secondary disabilities, in the social adjustments involved, in iatrogenic complications; or are they to be located in the joints, the liver, or other organs that may be affected as a consequence of treatments? Do they affect individuals, families, genetic carriers, sexual partners, or even future generations? Drawing partly upon personal history, conversations, semi-structured interviews, published biographical narrations, and the shared experience of patients’ groups, the article amends some misinterpretations and captures salient aspects of this illness experience.

AB - There are few non-medical reflections on haemophilia and chronic bleeding disorders (CBDs), and what there is often turn out to be wrong, outdated, or fanciful. CBDs are often hidden experiences, aside from the lack of treatment in literature, academic or not. This article re-frames CBDs through a philosophical, yet subjective, treatment that seeks to describe it as a cluster of experiences that often step outside of the bounds of the medical definition. Why have CBDs been so elusive? Partly because of their multi-layered, temporally structured, socially organized ontology, which makes them hard to define, locate, and reduce to one clear-cut perspective. Are they in the genes, in actual bleedings, in secondary disabilities, in the social adjustments involved, in iatrogenic complications; or are they to be located in the joints, the liver, or other organs that may be affected as a consequence of treatments? Do they affect individuals, families, genetic carriers, sexual partners, or even future generations? Drawing partly upon personal history, conversations, semi-structured interviews, published biographical narrations, and the shared experience of patients’ groups, the article amends some misinterpretations and captures salient aspects of this illness experience.

KW - Haemophilia

KW - Chronic bleeding disorders

KW - Patient experience

UR - http://online.liverpooluniversitypress.co.uk/toc/jlcds/10/3

U2 - 10.3828/jlcds.2016.26

DO - 10.3828/jlcds.2016.26

M3 - Article

VL - 10

SP - 305

EP - 322

JO - Journal of Literary and Cultural Disability Studies

JF - Journal of Literary and Cultural Disability Studies

SN - 1757-6458

IS - 3

ER -