1. National survey of patient symptoms and therapies among 707 women with a lipedema phenotype in the United States.
- Author
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Aday AW, Donahue PM, Garza M, Crain VN, Patel NJ, Beasley JA, Herbst KL, Beckman JA, Taylor SL, Pridmore M, Chen SC, Donahue MJ, and Crescenzi R
- Subjects
- Pregnancy, Female, Humans, United States epidemiology, Middle Aged, Edema diagnosis, Edema epidemiology, Edema therapy, Pain diagnosis, Pain epidemiology, Phenotype, Leg, Lipedema diagnosis
- Abstract
Background: National survey data exploring the patient experience with lipedema are lacking., Methods: We conducted national surveys from 2016 to 2022 of women with lipedema as well as female controls. Surveys collected information on symptomatology, pain, and therapies. We performed logistic regression comparing symptoms among those with lipedema versus controls adjusting for age and BMI., Results: A total of 707 women with lipedema and 216 controls completed the surveys. Those with lipedema had a mean age of 48.6 years and mean BMI of 40.9 kg/m
2 . Lipedema symptom onset occurred frequently at puberty (48.0%) or pregnancy (41.2%). Compared to controls, women with lipedema were more likely to report leg swelling in heat (odds ratio [OR], 66.82; 95% CI, 33.04-135.12; p < 0.0001), easy bruising (OR, 26.23; 95% CI, 15.58-44.17; p < 0.0001), altered gait (OR, 15.54; 95% CI, 7.58-31.96; p < 0.0001), flu-like symptoms (OR, 12.99; 95% CI, 4.27-39.49; p < 0.0001), joint hypermobility (OR, 12.88; 95% CI, 6.68-24.81; p < 0.0001), cool skin (OR, 12.21; 95% CI, 5.20-28.69; p < 0.0001), varicose veins (OR, 11.29; 95% CI, 6.71-18.99; p < 0.0001), and fatigue (OR, 9.59; 95% CI, 6.10-15.09; p < 0.0001). Additionally, 70.3% had upper arm involvement, 21.2% reported foot swelling, and 16.6% reported foot pain. Most (52.2%) reported no symptom improvement with diet or exercise. Common therapies used included compression therapy (45.0%), gastric bypass (15.7%), and lower-extremity liposuction (14.0%)., Conclusion: In a large, national, symptom survey, women with lipedema reported excess pain, swelling, and fat in the legs along with numerous symptoms beyond those classically described. Symptom responses to common therapies remain understudied., Competing Interests: Declaration of conflicting interestsAaron W Aday reports receiving consulting fees from Aeglea outside of the current work. Paula MC Donahue is a paid consultant for PureTech Health and Tactile Medical, and has received clinical and imaging grants from LymphaTouch. Manus J Donahue is a paid consultant or advisory board member for Pfizer, Inc., Alterity, bluebird bio, Novartis, LymphaTouch, and Graphite Bio, and he is the chief executive officer for Biosight, LLC, which operates as an imaging vendor and clinical research organization: there is no actual or perceived conflict of interest with these agreements and the scope of this work. John A Beasley reports consulting fees from JanOne, Janssen, and Novartis and he has received grant funding from Bristol Myers Squibb. All other authors report no conflicts.- Published
- 2024
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