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Lipedema is a chronic medical condition characterized by a symmetric buildup of adipose tissue (fat) in the legs and arms. A common but under-recognized disorder, Lipedema may cause pain, swelling, easy bruising, and impaired mobility. During the past decade, Lipedema, which occurs almost exclusively in women, has been demonstrated to be a disease that is distinct from obesity, lymphedema, cellulite, and other adipose conditions. The Lipedema Research Roadmap identifies recommendations to strengthen and grow Lipedema research. It presents a forward-looking summary of gaps in knowledge and opportunities for research and development, sourced from “Lipedema: A Current Understanding of Its Pathology and Natural History” (Lipedema Foundation; preprint, forthcoming), as well as input from authors and advisors. Recommendations are organized into six chapters covering key objectives: fostering the research environment, developing reporting standards and best practices, improving diagnosis, broadening understanding of the biology of the disease, identifying potential treatments, and enhancing epidemiology. The Research Roadmap development process incorporated input from more than 60 stakeholders, including researchers, clinicians, and patients. 24 external reviewers provided more than 1,300 comments and recommended edits.
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Background Lipedema is a chronic medical condition primarily affecting women, characterized by bilateral, symmetrical, disproportionate fat deposition in the lower limbs, and sometimes arms and lower trunk. Pharmacological interventions remain limited, but glucagon-like peptide-1 receptor agonists (GLP-1 RAs) and dual GLP-1/glucose-dependent insulinotropic polypeptide receptor agonists (GLP-1/GIP RAs) could provide potential therapeutic benefit due to their effects on weight, metabolism, pain, and inflammation. Methods This was a cross-sectional, patient-reported online survey study comparing self-reported lipedema symptom severity, medication use history, and physical and mental health outcomes across three groups of women with lipedema stratified by GLP-1/GIP receptor agonist medication use status (current users, discontinued users, and never-users). The survey captured demographics, lipedema characteristics, medication use history, and intensity of lipedema symptoms. Additionally, the Patient-Reported Outcomes Measurement Information System (PROMIS) Global Health-10 (PROMIS-10) instrument was used to assess physical and mental health. Analyses compared current users, discontinued users, and never-users of GLP-1/GIP RA medications. Results Of 2852 respondents, 2719 met inclusion criteria for analysis. Most participants (99.7%) identified as female, with a mean age of 52.4 years. Approximately 55% were current GLP-1/GIP RA users, most commonly taking tirzepatide. The primary reported reason for medication use was weight management (67.2%), followed by lipedema symptom management (19.3%). PROMIS-10 scores demonstrated higher physical and mental health ratings among current users compared with never-users (median Global Physical Health (GPH): 42.3 vs. 39.1; Global Mental Health (GMH): 44.9 vs. 40.8). Participants recalled improvements in both general health and lipedema symptoms after starting medication. Symptom severity scores for pain, swelling, and functional limitation were consistently lower among current users. Conclusions Self-reported participant responses indicated improved health and symptom severity while using GLP-1/GIP RA medication. These findings support further investigation of GLP-1/GIP RA medications as potential therapeutic options for lipedema.
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