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Joint hypermobility and related disorders :
studies in emotion, cognition and behavior.

Actualités

HAPAECC communication at the 15th International Congress on Nutrition and Food Studies

Sonia Lorente, researcher and coordinator of the HAPAECC research programme in Spain, attended the 15th International Congress on Nutrition and Food Studies, held at the University of Pretoria, South Africa, from 8 to 10 October 2025, representing the team. On this occasion, a paper was presented on gastrointestinal characteristics and eating patterns in women with Ehlers-Danlos syndrome. The results confirm the high frequency of gastrointestinal problems in people with Ehlers-Danlos, including food allergies and intolerances, and provide evidence of particularities in the eating habits of this specific population.

HAPAECC Presentation at the International Scientific Symposium 2025, The Ehlers-Danlos Society

Jelena Forget, psychologist and PhD student at the Psychopathology and Health Processes Laboratory, was pleased to present the qualitative results of her thesis entitled “Understanding the Suicidal Risk of People with Hypermobile Ehlers-Danlos Syndrome: A Comparative and Mixed Study” (RISEDh Project of the HAPAECC program) as a poster at The Ehlers-Danlos Society conference in Toronto (September 17-21). These results highlight the importance of taking into account the psychological suffering resulting from the difficult life experiences of patients with hEDS, and the need for a multidisciplinary approach in their care.

HAPAECC Study Presentations at the 2023 AFPSA Congress

Two HAPAECC members will present preliminary results of our projects at the 12th AFPSA Congress in Montpellier. Jelena Forget will present a poster on the results of a qualitative analysis of interviews conducted with people with hEDS who have a history of suicidal behavior or thoughts (RISEDh Project).

David Attali will present results from the ACTI-HEDS study at the symposium “Acute Pain and Chronic Pain Conditions: Experience and Associated Psychological Aspects” on July 7 at the congress. The presentation, entitled “Pain and Activity Management in Joint Hypermobility Conditions: Lexicometric Analysis of Interviews,” focuses on the results of a lexicometric analysis conducted based on interviews conducted in the ACTI-HEDS study. The aim of these analyses is to improve knowledge of the subjective aspects playing a role in the adoption of dysfunctional activity patterns (avoidance or excessive persistence of activity) in people with hypermobile Ehlers-Danlos syndrome or hypermobility spectrum disorder.

Publication of two books on chronic pain

Chronic pain is common in people suffering from certain hereditary connective tissue disorders (e.g., hypermobile Ehlers-Danlos, classic Ehlers-Danlos, Marfan syndrome, etc.). To this end, two practical books edited by Carolina Baeza-Velasco and Catherine Bungener were published in May 2023 by De Boeck Sup.
The first book is intended for clinicians and is a practical manual proposing an intervention protocol based on second- and third-wave cognitive-behavioral techniques, positive psychology, and hypnotherapy.
The second book is for patients. It covers the same 12 topics covered in the book for clinicians. This aim to develop psychological resources to better cope with pain. The book contains exercises to promote self-management for people suffering from chronic pain.

Communication au colloque de la Fondation Maladies Rares

David Attali présentera un poster sur des résultats préliminaires de l’étude ACTI-SEDh : Patterns d’activité et variables associées chez les personnes atteintes de syndrome d’Ehlers Danlos hypermobile ou de trouble du spectre de l’hypermobilité : Résultats préliminaires.

Résumé : Des résultats préliminaires de l’étude ACTI-SEDh ont été présentés en février 2023 lors du congrès régional de la Fondation Maladies Rares à Strasbourg. Ces résultats montraient une prédominance du pattern persistant (poursuite excessive des activités) chez les personnes atteintes de syndrome d’Ehlers-Danlos hypermobile ou de trouble du spectre de l’hypermobilité. Par ailleurs, le pattern évitant (évitement de l’activité) semblait être associé à l’altération fonctionnelle et être prédit par la kinésiophobie, le catastrophisme et certaines attitudes vis-à-vis de la douleur.

Webinar sur le syndrome d’Ehlers-Danlos hypermobile et troubles du spectre de l’hypermobilité

Dans ce webinaire adressé aux patients et aux soignants nous vous proposons trois présentations suivies d’un temps de questions/réponses :

« Gestion de l’activité et retentissement fonctionnel des troubles de l’hypermobilité articulaire ». David ATTALI.

« Modèle de la douleur dans l’hypermobilité articulaire et sa prise en charge ». François JEDRYKA.

« Dysautonomie dans le syndrome d’Ehlers-Danlos hypermobile et les troubles du spectre de l’hypermobilité ». Roland JAUSSAUD

13 janvier 2023, 17h-19h. Inscription GRATUITE et obligatoire en envoyant un mail à l’adresse suivante : david.attali@etu.u-paris.fr