|dc.description.abstract||Background: Lipoedema is an incurable, chronic adipose tissue disorder which often goes
unrecognised and misdiagnosed for overweight/obesity. Awareness and understanding of the
condition is limited due to lack of clinical and epidemiological research. Diet plays an important
role in the lives of those affected, with many individuals developing disordered eating patterns.
Despite this, dietetic input is scarce. This study aimed to provide preliminary data around dietary
practices adopted by individuals with lipoedema, their attitudes and behaviours towards eating and
their individual experiences with dietetic services.
Methods: An online questionnaire was conducted in partnership with Talk Lipoedema amongst
individuals with lipoedema living in the UK. The questionnaire was developed using a combination
of validated and non-validated tools. It was piloted amongst Talk Lipoedema’s committee members
prior to data collection. Semi-quantitative and qualitative methods were used within this study.
Data were analysed using non-parametric tests and thematic analysis.
Results: 190 respondents were recruited. 95% have made attempts to control their body shape
and/or size through dieting. More than 45 diets, 30 restricted food items/groups and 45 vitamins,
minerals and supplements were reported to have been used. Shape and weight concern was
prominent in respondents, driving the severity of disordered eating in this population 3.1 times
greater than normative community values. 25% of respondents had seen a dietitian, 80.4% of which
felt this was not beneficial. Three main themes emerged from consultation experiences: (lack of)
knowledge, (lack of) individualised care and the importance of building relationships.
Conclusions: Providing early dietetic input tailored for lipoedema may be a therapeutic strategy in
reducing the rates of disordered eating and improving psychological well-being in individuals with
lipoedema. For this to be achieved, knowledge and awareness of lipoedema must be improved
across all health care professionals. This study provides findings which are useful for directing