Table 1 Self-reported clinical information on the participants

Age (y) mean (SD)

40.43 (10.43)

Confirmed diagnosis, N (%)

44 (44.9)

Initial source of information on lipedema, N (%)

 Online

61 (62.3)

 Health professional

17 (17.3)

 Other

20 (20.4)

Lipedema onset, N (%)

 Childhood

13 (13.3)

 Puberty

43 (43.9)

 Pregnancy

11 (11.2)

 Menopause

5 (5.1)

 Other

13 (13.3)

 Hard to tell

5 (5.1)

 Liposuction, N(%)

11 (11.2)

BMI^a, N (%)

 18.5–24.99 (normal weight)

20 (20.4)

 25–29.99 (overweight)

26 (26.5)

 30–34.99 (obesity class I)

29 (29.6)

 35–39.99 (obesity class II)

11 (11.2)

 ≥ 40 (obesity class III)

9 (9.2)

 Missing data

3 (3.1)

WHR, N (%)

 < 0.85

62 (63.3)

 ≥ 0.85

21 (21.4)

 Missing data

15 (15.3)