West syndrome or infantile spasms is included on the list of rare diseases.
This is an infant epilepsy whose first symptoms appear between 4 and 6 months.
In its most severe forms, significant intellectual and motor after-effects cause severe multiple disabilities and a loss of autonomy in the child.
UNCERTAINTIES restores a selection of interviews from the corpus of the research program which particularly illustrate life situations and the processes of constructing family knowledge. To transcribe these testimonies in this form, the scientific team involved in the project worked with its associative partners (in particular the Tuberous Sclerosis Association of Bourneville and Les Enfants de West) in order to select the interviews before submitting this last in Between the Acts.
This creation is part of an approach aimed at fueling the discussion concerning the place of experiential knowledge in the management of rare diseases and disabilities.
The research program
“West syndrome: construction of knowledge and singularity of family experiences”
(Fam-West, 2016-2019) led by
Sophie Arborio
And
Emmanuelle Simon
and supported by the CPER Ariane and the Rare Disease Foundation devoted itself to the analysis of the construction of experiential knowledge of families with a child suffering from this rare disease/disability which is a severe and drug-resistant form of epilepsy .
Considering the specific medical issues posed by West syndrome in terms of diagnosis and treatments, this research in human and social sciences has developed an approach focused on the way in which young patients and their families appropriate – or not – diagnosis and methods of biomedical treatment. The challenge was to understand how their own knowledge about the disease and treatments is constructed throughout their journey and interacts with the modalities of their appropriation of the diagnosis and treatments. This patient-family approach also questioned the notion of expert patient (or even expert family) relating to the construction of knowledge about the disease and its treatments, which is all the more fundamental in the context of rare diseases.
Screenings and/or representations accompanied by interventions by researchers are offered to patient associations and professionals and students in the health and social sector.
For more information or to obtain the link to the film Uncertainties, contact us
Artistic direction / writing / directing / acting
Marie-Pierre Mazzarini
Scientific direction
Sophie Arborio & Emmanuelle Simon / University of Lorraine
Image creation
Vincent Conrad
General management
François Cacic
Film creation
Jean-Noel Pierre
Voice of the film
Sophie Arborio
Ingrid Bruant
Dominique Fabuel
Chloe Gonano
Patrick Kuhn
Delphine Ribere
Music
Carl Testa
Texts from the film
The Gay Knowledge - Friedrich Nietzsche
Thanks
Atrium - Woippy
MCL Saint Marcel - Metz
MPM Equipment
SKBL - Theater company
Partners
French Tuberous Sclerosis Association of Bourneville
Injeno
Children of West
With the support
- Crem (University of Lorraine)
- Rare Disease Foundation
- Ministry of Higher Education, Research and Innovation
- Grand Est Region
- European Regional Development Fund of the European Union
- ARIANE (Attractiveness of the Region: Innovation, Regional Planning, New Economic and Social Effects) is co-financed by the European Union as part of the FEDER-FSE Lorraine and Massif des Vosges 2014-2020 operation program.