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Abstract Lipedema is a wide-spread disease with painful accumulations of subcutaneous fat in legs and arms. Often obesity co-occurs. Many patients suffer from impairment in mobility and mental health. Obesity and mental health in turn can be positively influenced by physical activity. In this study we aimed to examine the interrelations between pain and physical activity on mental health in lipedema patients. In total, 511 female lipedema patients (age M = 40.16 ± 12.45 years, BMI M = 33.86 ± 7.80 kg/m 2 ) filled in questionnaires measuring pain (10-point scale), physical activity (7 Items; units per week), and mental health (PHQ-9; WHOQOL-BREF with subscales mental, physical, social, environmental, and overall health). Response surface analyses were calculated via R statistics. Explained variance was high for the model predicting depression severity (R 2  = .18, p < .001) and physical health (R 2  = .30, p < .001). Additive incongruence effects of pain and physical activity on depression severity, mental, physical, and overall health were found (all p < .001). In our study, physical activity and pain synergistically influenced physical, mental, and overall health. Pain did not only lead to low mental health but also interfered with the valuable potential of engaging in physical activity in lipedema patients.

Lipedema is a chronic adipose tissue disorder affecting approximately 11% of women worldwide. The illness is often misdiagnosed as obesity, and because of this, women often struggle in meetings with healthcare providers. Few studies have assessed these encounters of younger women with lipedema. The aims of this qualitative study were to explore women’s experiences in meetings with healthcare providers and the importance of social support and belonging, with a focus on younger women. Fifteen women with lipedema between the ages of 21 and 47 years (mean age 36.2 years) were interviewed. The results indicated that women felt stigmatized by healthcare providers and that younger women in their 20s and early 30s struggled more often than women of higher age when receiving their diagnosis. The feeling of shame and stigma were also dependent on the woman’s resources in handling the illness. The younger women reported that their self-confidence and romantic relationships were challenging. Social support and the feeling of belonging through romantic relationships or support groups were important resources for managing the illness. Highlighting the experiences of women may aid in increasing recognition and knowledge of lipedema. This in turn may reduce the stigma and lead to equitable healthcare services.

Lipoedema is a chronic disease in adipose tissue that almost exclusively affects women during periods of hormonal alterations. Its main symptoms include an abnormal accumulation of subcutaneous fat in the buttock, hips, and legs, which is associated with pain, swelling, and easy bruising. Herein, a grading in three stages is used to determine disease progression. Problematically, lipoedema manifestations are often confused with lifestyle-induced obesity, which is why the various health problems among affected women often remain unrecognized. Overall, research on lipoedema is scarce. As such, this study examined the health, health-related quality of life (HRQOL), and sense of coherence (SOC) among women with lipoedema.

PURPOSE: Lipoedema is a progressive adipose (fat) disorder, and little is known about its psychological effect. This study aimed to determine the experiences of physical and mental health and health care across stages of lipoedema. METHODS: Cross-sectional, secondary data from an anonymous survey (conducted 2014-2015) in Dutch and English in those with self-reported lipoedema were used (N = 1,362, Mdnage = 41-50 years old, 80.2% diagnosed). χ2 analyses of categorical data assessed lipoedema stage groups 'Stage 1-2' (N = 423), 'Stages 3-4' (N = 474) and 'Stage Unknown' (N = 406) experiences of health (physical and psychological), and health care. RESULTS: Compared to 'Stage 1-2', 'Stage 3-4' reported more loss of mobility (p =  < .001), pain (p =  < .001), fatigue (p = .002), problems at work (p =  < .001) and were seeking treatment to improve physical functioning (p =  < .001) more frequently. 'Stage 3-4' were more likely to report their GP did not have knowledge of lipoedema, did not take them seriously, gave them diet and lifestyle advice, dismissed lipoedema, and treated them 'badly' due to overweight/lipoedema compared to 'Stage 1-2' (p =  < .001). 'Stage 3-4' were more likely to report depression (p =  < .001), emotional lability (p = .033) eating disorders (p = .018) and feeling lonelier, more fearful, and stayed at home more (p =  < .001) and less likely to have visited a psychologist (p =  < .001) compared to 'Stage 1-2'. CONCLUSIONS: A divergent pattern of physical and psychological experiences between lipoedema stages reflects physical symptom differences and differences in psychological symptoms and health care experiences. These findings increase the understanding of lipoedema symptoms to inform psychological supports for women with lipoedema in navigating chronic health care management.

Abstract Objectives Lipoedema is a chronic fat disorder involving an excessive abnormal deposition of subcutaneous fat in the thighs, legs, hips and buttocks mainly (Wounds UK, 2017). The importance of healthy eating in lipoedema management has been recognised (Wounds UK, 2017), yet dietary guidelines specific for lipoedema are lacking (Bertsch et al., 2020). The study aimed to investigate the self-reported dietary and lifestyle impact on lipoedema management among a representative lipoedema population in the UK. Methods The study used an online questionnaire that consisted of multiple-choice and open-response questions to collect data on symptoms and diagnostic status of lipoedema and self-reported dietary and lifestyle impact on lipoedema management among participants. The questionnaire was constructed using the Survey Monkey software. The active online survey link was sent to Lipoedema UK's members and contacts via e-mail and also made accessible via the study flyer advertised on Lipoedema UK's website and newsletters. Ethical approval was obtained from the De Montfort University Faculty Research Ethics Committee of Health and Life Sciences prior to the study. Participants had given their consents before starting the survey. Data collection was anonymous. Data were analysed using SPSS v26.0. Results The results showed that 165 out of 257 participants (66.3%) had tried diet as a mean to improve their lipoedema symptoms in the past. Anti-inflammatory diet was reported to be one of the three most effective diets that improved their symptoms (either single or multiple). The other two diets were ketogenic diet and rare adipose disorder diet. Noticeably, 95% of the 257 participants were classified as either overweight or obese based on their Body Mass Index (BMI) measure. And 20% of the participants who tried weight loss diets had found improvements in their lipoedema conditions. Conclusions The study results will help inform the development of future research on finding a dietary solution to effective lipoedema management for the UK lipoedema population. Funding Sources De Montfort University funded the recruitment of a Research Assistant to support part of the data analysis work.

In early 2019, the Lipedema Foundation, in partnership with advisors from the Lipedema patient and research communities, launched the Lipedema Foundation Registry — an initial confidential survey to help understand the condition. After three years, we are ecstatic to share this Registry First Look report, providing perspective on the diverse experiences of people with Lipedema. We are tremendously thankful to those who contributed their time and insights, without which this report would not have been possible. This report includes data from the first 521 fully completed Registry surveys from people who believe they have Lipedema, out of 2,000 in-progress responses. These 521 people represent 14,556 years of lived experience with Lipedema, across dimensions including: • Diagnosis: This report focuses on the experiences of 521 people who either report having received a Lipedema diagnosis, or have symptoms sufficient for them to believe they have Lipedema. Data from non-Lipedema populations has been collected, but is not presented in this report. • Amount of time living with Lipedema: Participants include women with less than 10 years duration of the condition, though almost half of survey respondents had lived with Lipedema for more than 30 years at the time of participation. • Geography: Though only in English at this time, the Registry is multinational, with 21% of contributions from outside the US. Much captured here is consistent with existing academic literature and surveys. Findings include: • The Registry data is consistent with research showing the majority of patients first notice symptoms around the time of puberty; more specifically, the Registry data shows peak onset of symptoms between ages 12 and 14. • As widely reported by patients, this data shows long delays between onset and treatment. On average, women sought medical attention 17 years after first noticing symptoms, and received a diagnosis 10 years later. • Participants were able to identify Lipedema-like features in their bodies at frequencies consistent with the medical literature. They found Lipedema-like texture throughout their bodies, though most frequently in the arms and legs. • Both typical and flaring pain are common. Heaviness, bruising, and sensitivity to touch are also common and speak further to patients’ quality of life. After analyzing the data, the Lipedema Foundation team conducted two focus groups with patients to help understand and contextualize the findings. Their interpretations, insights and quotes appear throughout. Though this report is a great start, we hope it can be a tool to advance Lipedema awareness, understanding and care. Key next steps include: • Challenging healthcare professionals to recognize and understand Lipedema, and stop stigmatizing and dismissing patients when they seek care. • Informing scientific hypotheses and the research agenda. • Expanding and diversifying Registry participation, to ensure it represents the true diversity of the Lipedema patient population. Analysis of patient experience reminds us that Lipedema can present in many ways. This diversity asks us to take a closer look at typical descriptions of Lipedema, and this report should influence how we think about anatomical changes in Lipedema and progression of the disorder. These insights must be followed up with formal medical studies, but many hypotheses to be tested have been captured here in the patients’ own voices.

(1) Background: Lipoedema is a disease characterized by excessive bilateral and symmetrical accumulation of subcutaneous tissue in the lower extremities. It is a poorly understood condition, and low awareness of its existence often leads to incorrect diagnosis Initially, lipoedema was considered to be completely independent of lifestyle Currently, however, more and more cases of the coexistence of lipoedema and obesity are described in the literature as additionally affecting the severity of the disease The aim of the review is to present lipoedema as a social problem. (2) Methods: Materials on lipoedema in the social context were selected from 2018-2021. The PRISMA-Scr checklist was used in the review. (3) Results: Research has shown that more than 3/4 of patients with lipoedema are also overweight or obese. Patients with lipoedema have many comorbidities, and their presence negatively affects the quality of life. The quality of life in patients with lipoedema is lower than in healthy patients. (4) Conclusions: The number of studies available on lipoedema is low. Obesity is common in patients with lipoedema. Mental disorders increase the level of experienced pain. Lipoedema significantly reduces quality of life. A healthy lifestyle in patients with lipoedema could be helpful for prevention of complications and disability.

Lipedema is a chronic, progressive disease that almost exclusively affects women and often misdiagnosed as obesity or primary lymphedema. Research concerning lipedema is sparse, and there is a lack of studies focusing on women's experiences of living with the illness. We interviewed fourteen women with lipedema with the aim of describing their experiences of living with lipedema. Our results show that women felt controlled by their body, and were fat-shamed and viewed by others as a person who lacked character. They received unsupportive advice on how to manage from healthcare, and blamed themselves while striving to take responsibility.

Background:  Lipedema is a loose connective tissue disease affecting the limbs of women, that is difficult to lose by diet, exercise, or bariatric surgery. Publications from Europe demonstrate that lipedema reduction surgery improves quality of life for women with lipedema. There are no comparable studies in the United States (USA). The aim of this study was to collect data from women with lipedema in the USA who have undergone lipedema reduction surgery in the USA to determine if quality of life, pain, and other measures improved after lipedema reduction surgery. Methods:  Subjects were recruited and consented online for a 166-item questionnaire in REDCap. In total, 148 women answered the questionnaire after undergoing lipedema reduction surgery in the USA. Significance set at P < 0.05 was determined by ANOVA, Tukey’s multiple comparison test, or paired t-test. Results:  Quality of life improved in 84% and pain improved in 86% of patients. Ambulation improved most in lipedema Stage 3 (96%). Weight loss occurred in all stages by 3 months after surgery. Complications included growth of loose connective tissue within and outside treated areas, tissue fibrosis, anemia, blood clots, and lymphedema. Conclusions:  Women with lipedema noticed significant benefits after lipedema reduction surgery in the USA. Prospective studies are needed to assess benefits and complications after lipedema reduction surgery in the USA.

Lipedema is a chronic, progressive adipose tissue disorder that may impact the quality of life of women who suffer from it. The main aim of this study was to asses the role of perceived symptom severity, physical and psychological functioning with the disease in predicting quality of life in patients with lipedema. We conducted an online study with 329 participants who responded to five questionnaires measuring quality of life (World Health Organization Quality of Life BREF), lipedema symptom severity, mobility (Lower Extremity Functional Scale), depression (Patients Health Questionnaire-9), and appearance-related distress (Derriford Appearance Scale 24). Multiple hierarchical regression analyses showed that appearance-related distress and depression explained significantly more variance in quality of life when added to the symptom severity and mobility. Lower quality of life was predicted by higher symptom severity, lower mobility, higher appearance-related distress and higher depression severity. Appearance-related distress and depression constitute important aspects of psychological functioning in women with lipedema. Considering their relationship with quality of life, their assessment should be included in lipedema treatment with appropriate interventions aimed at decreasing appearance-related distress, as well as preventing and addressing depression.

INTRODUCTION: Lipoedema is a chronic disorder in which excessive fat distribution occurs predominantly from the waist down, resulting in a disproportion between the lower extremities and upper torso. Lipoedema is often not recognized, while patients experience pain and easy bruising. As a long-term condition, lipoedema has a massive effect on patients' lives and mental health. The aim of this study is to explore patient characteristics, quality of life, physical complaints and comorbidities in patients with lipoedema. METHODS: A survey was conducted by email amongst lipoedema patients, consisting of informed consent and multiple questionnaires. The questionnaires included general patient characteristics, physical complaints, comorbidities, RAND-36 and EQ-5D-3L. Participants who responded to a message on the Dutch Lipoedema Association website were recruited. RESULTS: All lipoedema patients experience physical complaints, with pain (88.3 %) and easy bruising (85.9 %) as primary complaints. The diagnosis was mostly made by a dermatologist after visiting a mean of 2.8 doctors. Furthermore, mean time from onset until diagnosis was 18 years. Quality of life (59.3) was significantly lower than the Dutch female average (74.9; p < 0.001). Additionally, patients with comorbidities had significant lower quality of life (RAND 54.7, p < 0.001). CONCLUSIONS: Lipoedema patients often have severe complaints and experience lower quality of life regarding physical, emotional and social functioning. Additionally, comorbidities have a large impact on quality of life.

This study aimed to explore patients' perceptions regarding the impact that lower limb chronic oedema has on their quality of life (QoL). A quantitative descriptive design was used to collect data from patients with lower limb chronic oedema. A condition-specific validated questionnaire was distributed to a purposive sample (n = 122) through manual lymphatic drainage/vascular/health clinics in Ireland. Results indicated that patients with lower limb chronic oedema experience a wide range of physical problems such as limb heaviness (74%, n = 66), weakness (44%, n = 40) and pain (38%, n = 34). Additionally, difficulties with walking (53%, n = 48), standing (51%, n = 46) and bending (45%, n = 40) were reported. Concerns regarding poor body image were strongly evident (76%, n = 68). Difficulties finding clothing/footwear to fit oedematous limb(s) were reported (59%, n = 53), in addition to finding clothes that participants would like to wear (64%, n = 58). Emotional symptoms of irritability (42%, n = 38), anxiety (41%, n = 37) and tension (40%, n = 36) were reported. Over half of the participants (55%, n = 49) stated that their chronic swelling affected their social functioning and their ability to engage in leisure activities. This study has identified that lower limb chronic oedema has significant psychological, social and physical implications for persons' QoL.

In 2014 250 women with Lipoedema took part in our survey about their experiences with Lipoedema. The results give a clear picture of what living with Lipoedema is like and reveal that along with the pain and discomfort caused by Lipoedema, many simple tasks that other people regard as straightforward become extremely challenging for people with Lipoedema. Lipoedema UK’s Big Survey 2014 led to the development of the Royal College of GPs’ e-learning course, a half hour course, which enables GPs to recognise Lipoedema and diagnose patients Our survey was created by Lipoedema UK, the Lymphoedema Department at St George’s Hospital, London, and the support of the Lymphoedema Support Network.