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Community Scoop » Ehlers-Danlos Syndromes New Zealand

Scoop Community provides New Zealand Community news and views ....

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Ehlers-Danlos Syndromes New Zealand

Ehlers-Danlos Syndromes (and hypermobility spectrum disorders) are 13+ types of a rare connective tissue disorder. Hypermobile type, our most prevalent type, is currently noted as 1:3100 1, but is thought to be more prevalent as described; the . ....

New Zealand , Kelly Mcquinlan , Ehlers Danlos Community , Ehlers Danlos Syndromes New Zealandfriday , Danlos Syndromes , Somatic Disorders , Factitious Disorder , Aotearoa New Zealand ,

Kelly McQuinlan | Scoop InfoPages

Kelly McQuinlan | Scoop InfoPages
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Auburn professor highlights challenges for disability employment

Becoming an advocate, researcher and spokesperson for people with chronic health conditions was never the role Julie Hill thought she would one day have when she embarked on her career as a preschool special education teacher. ....

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Frontiers | The Impact of Hypermobile "Ehlers-Danlos Syndrome" and Hypermobile Spectrum Disorder on Interpersonal Interactions and Relationships

Background: People with Ehlers-Danlos Syndromes and Hypermobility Spectrum Disorders are hampered in their social participation, especially in the social relationships they have. Objective: The aim of this study is to research the impact of hypermobile Ehlers-Danlos Syndrome (hEDS) and Hypermobile Spectrum Disorders (HSD) on interpersonal interactions and relationships. Methods: A phenomenological hermeneutic study was performed. Semi-structured interviews were used to explore the experiences of 11 participants. Results: Four themes emerged from the data analysis. (1) people with hEDS or HSD can no longer do what they want to do and that affects their identity, (2) people with hEDS or HSD have to find a balance in the amount of activities they participate in, (3) having hEDS or HSD influences how to ask for, accept and give help, and (4) Relationships are affected in persons with hEDS or HSD. As well as changes in the social network, different types of relationships are influenced by t ....

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