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Lipoedema is a painful non-pitting diffuse “fatty” swelling, usually confined to the legs, that occurs mainly in women. This scoping review aimed to provide an overview of the available research on the functioning of people with lipoedema, according to the International Classification of Functioning, Disability and Health (ICF) framework. Relevant publications and gray literature were retrieved until October 2022. The results sections of each publication were organized using a thematic framework approach. All included studies reported at least one outcome fitting within the domains of body functions and body structures, with most studies focusing on the categories of “sensation of pain”, “immunological system functions”, and “weight maintenance functions”. The ICF domains of activities and participation and environmental factors were mentioned in a small number of the included studies (17 and 13%, respectively), while the domain of personal factors was studied in half of the included studies. In conclusion, the emphasis of lipoedema research is on its description from a disorder-oriented point of view in the form of body functions and body structures, with a lack of information about the other domains of functioning.
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Purpose The aim of this study was to explore the functioning of people with lipoedema from their perspective. Methods This was a qualitative study following a phenomenological perspective using individual in-depth interviews with a convenience sample of 13 Dutch people with lipoedema. The data were analysed by using an interpretative phenomenological approach. Results Two overarching group experiential themes (GETs) were identified: (1) “physical complaints are only a part of their problems”, and (2) “longing for improved appearance and functioning”. The GETs were composed of the following subordinate GETs: “disproportionate functioning of the lower body”, “navigating daily life with lipoedema”, “coping with uncertainty”, “the toll of shame and stigmatization”, “consequences of a very negative self-image”, “desire for change and improved appearance and functioning”, and “an ongoing journey of acceptance”. Conclusions Participants experience that physical complaints affect daily activities, but with adequate adaptability, participation issues are relatively limited. Instead, shame about their appearance and (fear of) stigmatization mainly leads to social avoidance. Additionally, participants long for freedom to do what they want, wear what they want, and desire a different appearance. Therefore, the experienced level of acceptance of the condition is context- and situation-dependent and not straightforward, which is complicated by the burden of knowing that the condition is chronic.
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- Lipedema (2)
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