Women’s awareness and knowledge of lipedema in Turkey: Findings from a nationwide online survey

Introduction

Lipedema is a chronic adipose tissue disorder first described by Allen and Hinnes in 1940 as leg enlargement caused by subcutaneous fat and fluid accumulation in the bilateral hips and lower extremities. ¹ It is considered to arise from hormonal fluctuations associated with puberty, pregnancy, and menopause, or due to genetic factors. ² The main appearance is the symmetrical involvement of the hips and lower extremities. ¹ Some types of lipedema may involve the upper extremities, but they typically spare the trunk, hands, and feet. ³ Easy bruising occurs with less stress due to increased capillary fragility. ⁴ Skin pain, with or without light touch, is a typical attribute.^5,6 The diagnosis is often determined through patient history, familial history, and physical examination. ⁷ Lipedema might appear in individuals with a normal body mass index (BMI) in its earliest stages, but obesity affects the entire body and is always associated with a higher BMI. Although weight loss can be achieved by appropriate dietary interventions in obesity, the adipose tissue in lipedema is resistant to diet. ⁸ In contrast to lipedema, pain and easy bruising in the legs are not typical characteristics of lymphedema and obesity. ⁴

A major issue with lipedema is the mistaken or delayed diagnosis. It is frequently confused with lymphedema or obesity.^9,10 Frequently, an accurate diagnosis is only possible several years after the onset of symptoms, at a later stage.^11–13 Lack of awareness or knowledge among healthcare professionals and the public is one of the main causes of these problems. The public’s inadequate awareness of lipedema can result in individuals with the condition being unconscious of the fact that their symptoms signify a medical problem. In addition, it is known that the lack of awareness and knowledge about lipedema among healthcare professionals is one of the factors leading to delayed diagnosis and treatment. Numerous studies indicate that individuals often attend multiple physician appointments before obtaining a diagnosis.^12,13 For example, a survey conducted in the United Kingdom with 251 participants indicated that only 46.2% of lipedema cases were identified. ¹⁴ A 2022 study in Spain highlighted that patients required an average of 5.5 visits to obtain an appropriate diagnosis, with delays reaching up to 19.9 years. ¹⁵ A study conducted in the Netherlands showed that there was an average of 2.8 doctor visits before diagnosis and an 18-years diagnostic delay from the onset of symptoms. ¹¹ This situation leads patients to waste time on unnecessary treatments and ultimately obtain a correct diagnosis at a later stage. ¹⁶ The probability of individuals experiencing significant weight gain, joint complications, diminished mobility, and psychological disorders increases due to delayed diagnosis and treatment. Evaluating the public’s awareness and knowledge may reveal potential deficiencies and guide problem resolution. Understanding women’s information-seeking behavior may shed light on the methods for effectively bringing awareness and knowledge to them. Previous studies show that awareness and knowledge of lipedema are lacking among both the general population and healthcare professionals.^17–20 Nevertheless, data on lipedema awareness and knowledge levels among women in Turkey are inadequate.

This study aims to investigate the awareness, knowledge level, and willingness to receive information regarding lipedema among women in Turkey.

Methods

Results

This study, examining lipedema awareness, knowledge levels, and the willingness to receive information among women in Turkey, was conducted with 502 participants The mean (SD) age of 502 female patients participating in the study was 35.68 (±12.51) years, and the mean (SD) BMI value was 26.52 (±11.24) kg/m2. Participant demographic characteristics, including marital status, education level, and region of residence, are summarized in Table 1.

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Table 1.

Sociodemographic characteristics of the participants (n = 502).

Variable	Category	n	%
Marital status	Married	296	59.0
	Single	184	36.7
	Widowed	22	4.4
Education level	Primary school	34	6.8
	Middle school	27	5.4
	High school	111	22.1
	University	274	54.6
	Postgraduate	56	11.2
Region of residence	Marmara	244	48.6
	Aegean	85	16.9
	Central Anatolia	72	14.3
	Black sea	38	7.6
	Mediterranean	22	4.4
	Southeast Anatolia	17	3.4
	Eastern Anatolia	24	4.8

Awareness and knowledge of lipedema

Although only 5.6% of participants reported a prior diagnosis of lipedema, 76.1% had heard of the condition. Correct identification of lipedema was observed in 69.1% of respondents. Lipedema-related symptoms were frequently reported, most notably disproportionate lower-body fat accumulation (74.9%), leg pain (47.4%), and resistance to diet and exercise (42.0%). Overall awareness, knowledge, and perceptions related to lipedema are summarized in Table 2.

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Table 2.

Awareness and symptom-related responses regarding lipedema (n = 502).

Variable	Response	n	%
Previously diagnosed with lipedema	No	463	92.2
	Yes	28	5.6
	Do not remember	11	2.2
Heard about lipedema before	No	120	23.9
	Yes	382	76.1
Definition of lipedema	Fat accumulation in legs/arms in women	347	69.1
	Subcutaneous fluid accumulation	70	13.9
	Hormonal imbalance	2	0.4
	Eating habits/obesity	8	1.6
	Not heard/do not know	75	14.9
Disproportionate fat in hips and legs	No	126	25.1
	Yes	376	74.9
Resistance to diet and exercise	No	291	58.0
	Yes	211	42.0
Easy bruising tendency	No	382	76.1
	Yes	120	23.9
Painful legs	No	264	52.6
	Yes	238	47.4
Difference in leg circumference between morning and evening	No	363	72.3
	Yes	139	27.7
Do not know/Uncertain responses	Selected “Do not know”	75	14.9

Self-reported symptom burden

The mean lipedema knowledge score was 2.68 ± 1.51 (range: 0–6), indicating overall low to moderate knowledge levels in the study population. Based on predefined score ranges, 39.8% of participants were classified as having low knowledge (0–2), 51.2% as moderate knowledge (3–4), and only 9.0% as high knowledge (5–6). The mean symptom burden score was 2.16 ± 1.58 (range: 0–5), reflecting substantial variability in lipedema-related symptom reporting among participants.

The most frequently reported symptoms were disproportionate fat accumulation in the lower body (34.9%) and thicker legs than those of individuals of similar weight (30.7%). Approximately one quarter of participants reported easy bruising (27.3%) and increased leg swelling in the evening (26.9%), whereas painful legs were less commonly reported (12.0%) (Table 3).

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Table 3.

Frequency of self-reported lipedema-related symptoms (n = 502).

Symptom	Never/Rarely/Sometimes n (%)	Often/Always n (%)
Easy bruising	365 (72.7)	137 (27.3)
Increased leg swelling in the evening	367 (73.1)	135 (26.9)
Thicker legs compared with individuals of similar weight	348 (69.3)	154 (30.7)
Painful legs	442 (88.0)	60 (12.0)
Exercise-resistant regional fat accumulation	371 (73.9)	131 (26.1)
Disproportionately greater fat accumulation in the lower body	327 (65.1)	175 (34.9)

Often/Always responses were considered indicative of clinically relevant symptoms.

Knowledge score comparisons

Participants who had heard about lipedema had higher knowledge scores than those who had not (3.03 ± 1.26 vs 1.58 ± 1.72; Welch t-test, p < .001). Knowledge scores did not differ significantly between participants with and without a prior lipedema diagnosis (3.21 ± 1.32 vs 2.68 ± 1.51, respectively; p = .067).

Participants who reported healthcare professionals as a source of lipedema-related information had significantly higher knowledge scores than those who did not (3.48 ± 1.23 vs 2.42 ± 1.51, p < .001). In contrast, participants who reported social media as a source of information showed only slightly higher knowledge scores compared with those who did not (2.82 ± 1.36 vs 2.55 ± 1.64), and this difference did not reach statistical significance (p = .052).

Knowledge level was significantly associated with prior awareness of lipedema (p < .001), whereas no significant association was observed with prior diagnosis (p = .087) (Table 4).

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Table 4.

Association of knowledge level with lipedema diagnosis and awareness (n = 502).

Knowledge level	Diagnosed n (%)	Not diagnosed n (%)	Do not remember n (%)	Heard about lipedema *n (%)	Not heard *n (%)
Low knowledge (n = 200)	7 (3.5)	185 (92.5)	8 (4.0)	123 (61.5)	77 (38.5)
Moderate knowledge (n = 257)	17 (6.6)	237 (92.2)	3 (1.2)	219 (85.2)	38 (14.8)
High knowledge (n = 45)	4 (8.9)	41 (91.1)	0 (0.0)	40 (88.9)	5 (11.1)
Total (N = 502)	28 (5.6)	463 (92.2)	11 (2.2)	382 (76.1)	120 (23.9)
χ 2 test	​	​	​	​	P value
Diagnosis × Knowledge level		​	​	​	.087
Awareness* × Knowledge level		​	​	​	< .001

Factors associated with self-reported lipedema suspicion

In the multivariable logistic regression model, symptom burden emerged as the strongest independent predictor of self-reported lipedema suspicion. Each one-point increase in symptom burden score was associated with a 38% increase in the odds of reporting lipedema suspicion (OR = 1.38, 95% CI: 1.18–1.63, p < .001). Awareness of lipedema was inversely associated with self-reported suspicion (OR = 0.24, 95% CI: 0.09–0.64, p = .004), indicating that participants who had previously heard of lipedema were less likely to report suspicion after adjustment for symptom burden. Lipedema knowledge score was not an independent predictor of suspicion (p = .144) (Table 5).

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Table 5.

Multivariable logistic regression analysis of factors associated with self-reported lipedema suspicion.

Variable	B	SE	Wald χ2	OR (Exp(B))	95% CI for OR	P Value
Symptom burden score	0.325	0.083	15.28	1.38	1.18 – 1.63	< .001
Knowledge score	0.138	0.094	2.14	1.15	0.95 – 1.38	.144
Awareness of lipedema (Yes)	−1.421	0.495	8.23	0.24	0.09 – 0.64	.004
Constant	−2.344	0.372	39.78	—	—	< .001

OR: odds ratio; CI: confidence interval; SE: standard error; Wald χ²: Wald chi-square statistic. Lipedema suspicion was coded as Yes = 1 and No/Unsure = 0.

Discussion

This study investigated the awareness, knowledge level, and willingness to receive information about lipedema among women in Turkey, finding that 76.1% of participants reported having previously heard of the condition. Participants of 69.1% correctly identified lipedema as “fat accumulation in the legs and arms in women,” confirming their awareness. The knowledge level of the study population was generally evaluated as low to moderate. Only 9% of participants exhibited a high level of knowledge, while 71.3% reported a willingness to receive further information.

The significant association between having heard of lipedema and the level of knowledge revealed in the study demonstrates the value of awareness for knowledge acquisition. Nonetheless, just awareness might be inadequate for obtaining accurate knowledge. In this study, low to medium levels of knowledge, despite elevated lipedema awareness and correct definitions, may suggest that awareness cannot always be transformed into accurate and sufficient knowledge. One of the various reasons for this situation could be the source of the information. In this study, which identifies social media as the most frequent source of information, it is noteworthy that participants who regarded social media as an information source did not demonstrate a significant difference in their level of knowledge compared to those who did not. Studies similar to ours, but conducted on Swedish and Czech women diagnosed with lipedema, showed that when asked where they first heard about lipedema, participants most frequently answered social media and online platforms, respectively.^21,23 In addition, the article dealing with the issue of lipedema in Spain indicates that awareness is mostly generated by social media, but this results in an increase in non-scientific information and, consequently, confusion. ²⁴ This situation highlights the importance of obtaining accurate information from a trustworthy source about lipedema, a health problem that is not yet sufficiently recognized by society. In the current study, participants who identified healthcare professionals as a source of information had significantly higher levels of knowledge compared to those who did not, which is another finding demonstrating the importance of the information source.

When examining the willingness to receive information, it was determined that the majority of participants reported a desire for more knowledge concerning lipedema, identifying official entities such as healthcare professionals and the e-government health portal as sources for this information. However, the majority of participants also reported that healthcare professionals do not adequately regard lipedema. The literature has frequently emphasized problems like healthcare professionals’ ignorance of lipedema and their mistaken and delayed diagnosis.^11,23,25,26 A recent study in Turkey has shown a lack of awareness and knowledge about lipedema among physicians. ¹⁸ The lack of a significant association between diagnosis and knowledge level in this recent study may indicate that even patients who have received a diagnosis can not receive adequate information. This result may contribute to growing evidence of a lack of knowledge, awareness, or information-giving in the healthcare system.^23,27,28

The additional subjects evaluated in this study were self-reported symptom burden, self-reported lipedema suspicion, self-perceived lipedema status, healthcare-seeking behavior, and misconceptions about lipedema. Multivariate analyses suggested that individuals largely based their clinical suspicion on the severity of their experienced symptoms, showing that symptom burden was the strongest predictor of self-reported lipedema suspicion. This could be because individuals tend to research this topic as their symptoms worsen, leading to the emergence of lipedema suspicions. In contrast, the reverse association between lipedema awareness and suspicion could suggest that as awareness increases, symptoms are interpreted more accurately and distinctively, preventing misconceptions.

In addition, in this study, out of 106 participants who believed they had lipedema and 202 participants who reported uncertainty, only 50 participants reported receiving a professional evaluation. This situation may arise from the perception that the healthcare system does not adequately recognize lipedema or from individuals’ lack of awareness regarding their symptoms or the associated clinical entities.

Our results support the findings in the literature in terms of the need to improve awareness and knowledge levels of lipedema among the public and healthcare professionals.^18,25 Increasing individuals’ awareness and knowledge can contribute to a more accurate estimation of the potential causes of symptoms experienced by those who are experiencing them. Thereby, the process leading to the correct diagnosis can be supported. Additionally, increased awareness and knowledge can accelerate the diagnostic process, facilitating early intervention and minimizing morbidity. One of the future goals may be to increase the knowledge levels of healthcare professionals by including more information about lipedema in their training and to ensure that the public receives accurate information from healthcare professionals.

There are some limitations to this online survey study. The fact that the majority of participants have a high school education or higher may have led to the finding that awareness, knowledge, and willingness for information are higher than they actually are. Additionally, the fact that almost half of the participants are from the Marmara region affects the generalizability of the results to the entire country. Due to the voluntary nature of survey participation, those interested in lipedema may engage more frequently, leading to potential bias. However, in cases of voluntary participation, this circumstance is unavoidable. In this study, the authors used a questionnaire they designed based on existing guidelines. However, there are likely other factors that the survey did not examine. For example, the survey excluded inquiries regarding lipedema treatment. This situation highlights the need for validated and reliable assessment tools to evaluate lipedema awareness and knowledge levels among healthy or diagnosed individuals in society. This study was conducted among women in Turkey and is a local study; the findings may not reflect the global situation.

In conclusion, this survey study examined the awareness, knowledge level, and willingness to receive information about lipedema among women in Turkey, revealing that most participants were aware of the disease. However, a low-to-medium level of knowledge was identified. Although participants most frequently reported that they obtained information from social media, it was determined that those who received information from healthcare professionals had a higher level of knowledge compared to those who did not. The majority of participants expressed a desire for more information from healthcare professionals and government agencies, respectively. Nevertheless, another significant finding was the perception that the healthcare system does not take lipedema seriously enough. In the future, policies may be developed to increase awareness and knowledge levels of lipedema among both the public and healthcare professionals. Future studies ought to emphasize enhancing the accuracy and generalizability of results by engaging larger and more homogeneous populations via surveys with established validity and reliability.

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