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Reasons for Participating in the EDS-HEART Program: Holistic and Performative Within a Supportive Community.

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A holistic movement program improved body schema, motivation, and psychosocial well-being in women with hypermobile Ehlers-Danlos Syndrome (hEDS), reducing fear of movement and enhancing physical activity enjoyment.

Keywords:
Merleau-Pontybody schemaembodied movement programenjoyable exercise participationhypermobile Ehlers–Danlos syndromelove of movementpeople with disabilitiesphenomenologypsychosocial healthpublic health policy

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Area of Science:

  • Movement Science
  • Physical Therapy
  • Psychosomatic Medicine

Background:

  • Hypermobile Ehlers-Danlos Syndrome (hEDS) presents complex health risks and kinesiophobia.
  • Adult women with hEDS often experience fear of movement, impacting physical activity.
  • Holistic, embodied movement approaches are needed to address these challenges.

Purpose of the Study:

  • To evaluate the impact of the EDS-HEART program on body schema, health, and lifestyle in women with hEDS.
  • To explore how the program influences the joy of movement and physical activity participation.
  • To assess the program's effect on kinesiophobia and psychosocial well-being.

Main Methods:

  • A seven-week, community-based, quasi-experimental study involving six women with hEDS.
  • The EDS-HEART program integrated stretching, strength training, and performative movement sequences.
  • Qualitative analysis using hermeneutic phenomenology to understand participant experiences.

Main Results:

  • Participants reported improved body schema, including enhanced awareness, confidence, posture, and proprioception.
  • The program was perceived as highly motivating due to its holistic, embodied, performative, pleasant, and safe nature.
  • Psychosocial benefits included a supportive setting, pleasure, euphoria, and reduced social comparison and fear of movement.

Conclusions:

  • The EDS-HEART program positively impacted body schema, motivation, and psychosocial health in women with hEDS.
  • Holistic and accessible movement programs are recommended for individuals with hEDS to improve physical and psychosocial health.
  • Findings suggest a significant increase in the joy of movement and physical activity participation.