In 2016, the association produced a 50-minute documentary titled « Living with Arthrogryposis », covering various medical and practical aspects.
This film was funded and created by the Alliance Arthrogryposis association, which retains ownership. For any use (commercial or otherwise), prior written authorization must be obtained from the association:
Exemption :
For individuals affected by arthrogryposis, the association permits private screenings of the film, as well as copies for sharing with family members, friends, and caregivers, provided it remains within a private setting.
Decision of the Board of Directors, 26/05/2016
This film provides answers to your questions through testimonies from parents, children, and doctors. Watch it in its entirety; the table of contents below will help you revisit the topics that interest you the most.
New in 2023: Subtitles are now available in French, as well as in English, German, Spanish, Italian, Arabic, Chinese, Hindi, Russian, Ukrainian, and more. While the French and English subtitles have been carefully proofread and corrected, translations into foreign languages were created using automated tools and may contain errors ! User Guide
Table of Contents
(click on a link to position directly in the video )
THE ASSOCIATION’S ANNUAL WEEKEND
00:00 introduction
00:31 arthrogryposis: the effects
THE DIAGNOSIS OF THE DISEASE
01:16 testimony from Matthieu and Amanda
03:04 testimony from Alan and Cécile
03:26 testimony from Sophie
03:39 testimony from Philippe and Myriam
03:50 testimony from Stéphane and Gaëlle
04:08 testimony from Jean-Pierre and Marie (grandparents)
04:28 testimony from Isabelle and Elodie
04:56 testimony from Stéphane and Gaëlle
05:21 testimony from Annie, arthrogryposis in the past
THE BIRTH OF THE ASSOCIATION
06:00 testimony from Adeline
07:56 arthrogryposis: origin, evolution, and medical care
REFERENCE CENTER (Grenoble University Hospital)
08:23 intervention by Pr Jacques GRIFFET (pediatric orthopedic surgeon)
09:05 physiotherapy in the treatment of arthrogryposis
09:14 testimony from a family
09:40 testimony from Sophie and Emma
10:13 testimony from Stéphane and Gaëlle
10:29 testimony from Damien
10:52 assessment at the reference center
11:16 Pr Pierre-Simon JOUK: classification of arthrogryposis into 3 groups
13:36 description of the assessment (intervention by Pr Pierre-Simon JOUK)
14:42 occupational therapy in the treatment of arthrogryposis
14:47 intervention by Anne-Sophie HUGUES (occupational therapist)
15:41 intervention by Pr Jacques GRIFFET (pediatric orthopedic surgeon)
16:26 intervention by Emmanuelle DUPRAZ (psychologist)
17:15 intervention by Dr Klaus DIETERICH (geneticist)
17:54 intervention by Pr Pierre-Simon JOUK (department of genetics and reproduction)
SCHOOLING
18:37 intervention by Corinne (teacher Maya – kindergarten in Marseille)
20:27 testimony from Damien
20:38 testimony from Clarisse
20:50 testimony from Emma
21:10 testimony from Isabelle
21:25 testimony from Sophie
21:41 testimony from Jean-Pierre and Marie
RELATIONSHIPS WITH OTHERS
22:07 testimony from Damien
22:34 testimony from Clarisse
22:42 testimony from Klervi
22:54 testimony from Sophie
23:01 testimony from Isabelle
PROFESSIONAL LIFE
23:20 testimony from Marion
24:43 intervention by Nicolas (L’Oréal)
25:45 intervention by Anaïs (L’Oréal)
26:17 testimony from Emilie
28:42 RELATIONSHIP WITH THE DISEASE & PERSONAL DEVELOPMENT
29:03 testimony from Emma
29:12 testimony from Klervi
29:26 testimony from Luan
29:34 testimony from Clarisse
29:43 testimony from Klervi
29:50 testimony from Emilie
30:22 testimony from Annie
30:36 testimony from Jean-Luc
30:51 intervention by Emmanuelle DUPRAZ (psychologist)
32:19 ACTIVITIES & LEISURE
32:33 testimony from Fabien
34:05 testimony from Marion
35:38 testimony from Emilie
35:57 testimony from Juliette
36:13 testimony from Marion
36:19 LIVING WITH THE DISEASE
36:33 testimony from Fanny
39:38 testimony from Juliette
43:04 testimony from Marie-Claude
43:24 ROLE OF THE ASSOCIATION
43:25 the annual weekend (footage)
44:29 the association’s goals (explanation by Marie-Claude)
45:03 the scientific council
46:03 the association’s publication: a little light in the eyes
46:46 DISABILITY & SOCIETY
46:54 testimony from Marie-Claude
47:24 testimony from Emilie
47:43 testimony from Jean-Pierre and Marie
47:51 testimony from Sophie
48:02 testimony from Alan and Cécile
48:27 testimony from Stéphane and Gaëlle
48:38 testimony from Isabelle SADAT and Elodie
49:01 testimony from Annie
49:14 testimony from Marion
49:30 testimony from Philippe and Myriam
49:35 testimony from Jean-Luc
49:53 testimony from Fanny
50:34 TRAILER (sponsors, acknowledgements, and production team)
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