An uncertain uphill battle - experiences and consequences of living with lipedema.

PURPOSE: To describe and analyse experiences of living with lipedema. Methods: Individual, semi-structured interviews with a purposive sample of 12 women diagnosed with lipedema and analysed by qualitative content analysis utilizing an inductive approach. RESULTS: The overarching theme, "An uncertain uphill battle against a divergent body and societal ignorance", covers the experiences of living with lipedema and is based on five categories; "Captivated by a disintegrating body", "Face the impairments of a chronic condition", "Experience social exclusion", "Need emotional support to go on" and "Mull over an insecure future". The women felt entrapped within their bodies and experienced social exclusion due to the chronic symptoms and the progressive body shape alteration caused by their illness. Having experienced deficient information on the illness, varying support from other people, and a deteriorating economic situation, the women face an uncertain future. CONCLUSIONS: Symptoms and restrictions caused by lipedema affect women's livelihood and future, as there are no indications for disease improvement. Preventive work aimed at reducing health deterioration should be a priority. More research is needed to raise healthcare awareness regarding difficulties experienced by patients with lipedema.

A Case Series of Lymphatic Injuries After Suction Lipectomy in Women with Lipedema.

BACKGROUND Lipedema is a loose connective tissue disease characterized by disproportionate subcutaneous adipose tissue hypertrophy in the extremities. There is evidence of impaired lymphatic function in women with lipedema at all stages without signs of trophic skin changes associated with hereditary or acquired lymphedema. A modification of suction lipectomy is used to treat lipedema tissue and can reduce pain, limb size, and limb swelling and reduce the need for compression in women with lipedema. Studies have shown that modified liposuction can improve quality of life and mobility. There are no reports of lymphatic injury after suction lipectomy in patients with lipedema in PubMed indexed journals. CASE REPORT Three women with lipedema who had no prior venous or lymphatic disease developed new-onset symptomatic International Society of Lymphology (ISL) Stage 2 or 3 lymphedema and skin and tissue changes within 6 months to 1 year after suction lipectomy for lipedema tissue on the legs. Each of the 3 women had their surgeries performed using different suction devices and under different types of anesthesia. Two of the lymphatic injury cases had subsequent nuclear lymphoscintigrams that confirmed impaired lymphatic function. CONCLUSIONS We report 3 cases of women with lymphatic injuries after modified suction lipectomy to treat lipedema. Clinical history, exams, and confirmatory studies support the assessment that suction lipectomy caused newly-manifested signs and symptoms of lymphedema. Further study is needed to determine the risk of permanent lymphatic injury with suction lipectomy in larger numbers of lipedema patients.

A Young Woman with Excessive Fat in Lower Extremities Develops Disordered Eating and Is Subsequently Diagnosed with Anorexia Nervosa, Lipedema, and Hypermobile Ehlers-Danlos Syndrome.

BACKGROUND Lipedema is a loose connective tissue disease that causes disproportionate subcutaneous fat accumulation on the extremities. As a result of the increased subcutaneous tissue accumulation, lipedema is often confused with obesity by both physicians and patients. Poor awareness and limited diagnosis of lipedema contribute to the confusion of lipedema with obesity and can lead to decreased body image acceptance. Patients with lipedema may have anorexia nervosa, an eating disorder characterized by a distortion of body image, incorrect self-identification of being overweight, restricted eating behavior, and a relentless pursuit of weight loss. CASE REPORT A young woman with disproportionate fat accumulation on the lower half of her body self-identified as having obesity. She developed restrictive eating behavior and became obsessed with weight loss, resulting in anorexia nervosa. Her disproportionate subcutaneous tissue persisted despite losing weight to reach a nadir BMI of 15 kg/m². After a decade-long struggle, her eating disorder resolved, and she maintained a healthy weight and BMI of 21.5 kg/m² but disproportionate fat remained in her lower body. She experienced increasing leg tenderness, pain, and easy bruising and was diagnosed with lipedema. CONCLUSIONS Lack of recognition of lipedema by medical professionals and the public as a weight loss-resistant disease can affect body image acceptance. Lipedema was mistaken for obesity by the young woman in this case and likely played a role in her development of an eating disorder. Eating disorders, such as anorexia nervosa, are not rare and may be more common in women with lipedema.

Cause and management of lipedema-associated pain.

Lipedema is a painful, underdiagnosed adipose tissue disorder, characterized by symmetrical swelling of the extremities due to subcutaneous fat deposition in the buttocks, thighs, legs, and arms, sparing the most distal part of the extremities. Although etiology and pathogenesis of lipedema is unclear, possible role of hormonal and genetic factors have been proposed previously. Patients with lipedema suffer from pain, easy bruising, tenderness, and disfigurement. Pain is the leading symptom in lipedema. Since the pain is associated with depression and impaired quality of life, reduction of pain is the major therapeutic approach. Pain in lipedema is attributed to allodynia, exaggerated sympathetic signaling, and estrogens. Although the mechanism of pain in lipedema is uncertain, effective treatment of lipedema should provide a satisfactory pain reduction. Efficacy of the conservative treatment is a matter of debate. Microcannular tumescent liposuction is the most effective therapeutic option for lipedema. There is a large body of evidence that this procedure significantly reduces pain in patients with lipedema.

Selenium Deficiency in Lymphedema and Lipedema-A Retrospective Cross-Sectional Study from a Specialized Clinic.

BACKGROUND: Selenium is a trace element, which is utilized by the human body in selenoproteins. Their main function is to reduce oxidative stress, which plays an important role in lymphedema and lipedema. In addition, selenium deficiency is associated with an impaired immune function. The aim of this study was to determine the prevalence of selenium deficiency in these conditions, and if it is associated with disease severity and an associated medical condition such as obesity. METHODS: This cross-sectional study is an anonymized, retrospective analysis of clinical data that was routinely recorded in a clinic specialized in lymphology. The data was comprised from 791 patients during 2012-2019, in which the selenium status was determined as part of their treatment. RESULTS: Selenium deficiency proved common in patients with lymphedema, lipedema, and lipo-lymphedema affecting 47.5% of the study population. Selenium levels were significantly lower in patients with obesity-related lymphedema compared to patients with cancer-related lymphedema (96.6 ± 18.0 µg/L vs. 105.1 ± 20.2 µg/L; p < 0.0001). Obesity was a risk factor for selenium deficiency in lymphedema (OR 2.19; 95% CI 1.49 to 3.21), but not in lipedema. CONCLUSIONS: In countries with low selenium supply, selenium deficiency is common, especially in lymphedema patients. Therefore, it would be sensible to check the selenium status in lymphedema patients, especially those with obesity, as the infection risk of lymphedema is already increased.

Prevention of Progression of Lipedema With Liposuction Using Tumescent Local Anesthesia: Results of an International Consensus Conference.

BACKGROUND: Lipedema is a chronic, progressive disorder of subcutaneous adipose tissue that usually affects the lower extremities of women. Also known as "two-body syndrome," the fat accumulations in lipedema are unsightly and painful. The disorder is well-known in Europe but is largely unrecognized and underdiagnosed in the United States. OBJECTIVE: To hold the First International Consensus Conference on Lipedema with the purpose of reviewing current European guidelines and the literature regarding the long-term benefits that have been reported to occur after lymph-sparing liposuction for lipedema using tumescent local anesthesia. METHODS: International experts on liposuction for lipedema were convened as part of the First International Congress on Lipedema in Vienna, Austria, June 9 to 10, 2017. RESULTS: Multiple studies from Germany have reported long-term benefits for as long as 8 years after liposuction for lipedema using tumescent local anesthesia. CONCLUSION: Lymph-sparing liposuction using tumescent local anesthesia is currently the only effective treatment for lipedema.

Lipedema: A Call to Action!

Lipedema is a chronic progressive disease characterized by abnormal fat distribution resulting in disproportionate, painful limbs. It almost exclusively affects women, leading to considerable disability, daily functioning impairment, and psychosocial distress. Literature shows both scarce and conflicting data regarding its prevalence. Lipedema has been considered a rare entity by several authors, though it may be a far more frequent condition than thought. Despite the clinical impact on women's health, lipedema is in fact mostly unknown, underdiagnosed, and too often misdiagnosed with other similarly presenting diseases. Polygenic susceptibility combined with hormonal, microvascular, and lymphatic disorders may be partly responsible for its development. Furthermore, consistent information on lipedema pathophysiology is still lacking, and an etiological treatment is not yet available. Weight loss measures exhibit minimal effect on the abnormal body fat distribution, resulting in eating disorders, increased obesity risk, depression, and other psychological complaints. Surgical techniques, such as liposuction and excisional lipectomy, represent therapeutic options in selected cases. This review aims to outline current evidence regarding lipedema epidemiology, pathophysiology, clinical presentation, differential diagnosis, and management. Increased awareness and a better understanding of its clinical presentation and pathophysiology are warranted to enable clinicians to diagnose and treat affected patients at an earlier stage.

Lipedema and Dercum's Disease: A New Application of Bioimpedance.

Background: Lipedema and Dercum's disease (DD) are incompletely characterized adipose tissue diseases, and objective measures of disease profiles are needed to aid in differential diagnosis. We hypothesized that fluid properties, quantified as tissue water bioimpedance in the upper and lower extremities, differ regionally between these conditions. Methods and Results: Women (cumulative n = 156) with lipedema (n = 110), DD (n = 25), or without an adipose disease matched for age and body mass index to early stage lipedema patients (i.e., controls n = 21) were enrolled. Bioimpedance spectroscopy (BIS) was applied to measure impedance values in the arms and legs, indicative of extracellular water levels. Impedance values were recorded for each limb, as well as the leg-to-arm impedance ratio. Regression models were applied to evaluate hypothesized relationships between impedance and clinical indicators of disease (significance criteria: two-sided p < 0.05). Higher extracellular water was indicated (i) in the legs of patients with higher compared with lower stages of lipedema (p = 0.03), (ii) in the leg-to-arm impedance ratio in patients with lipedema compared with patients with DD (p ≤ 0.001), and (iii) in the leg-to-arm impedance ratio in patients with stage 1 lipedema compared with controls (p ≤ 0.01). Conclusion: BIS is a noninvasive portable modality to assess tissue water, and this device is available in both specialized and nonspecialized centers. These findings support that regional bioimpedance measures may help to distinguish lipedema from DD, as well as to identify early stages of lipedema.

[Lipoedema: Symptoms, diagnosis and treatment. A literature review]. / Lipedema: clínica, diagnóstico y tratamiento. Revisión de la literatura.

INTRODUCTION: Lipoedema is a chronic disorder of adipose tissue, characterised by disproportionate fat deposits in the lower limbs and pain with preservation of the feet. The condition usually only affects women. Diagnosis is clinical and mainly by exclusion. This disorder is little known and underdiagnosed. The objective of this article was to perform a non-systematic review of the literature on lipoedema, its diagnostic criteria and proposed treatments. METHODOLOGY: A literature search was carried out from January 2012 to January 2018, in the following databases: Pubmed, Scopus, Medline, Web of Science and CINAHL. SELECTION OF STUDIES: A total of 12 articles were included, of which 10 were reviews, one was a cross-sectional study and another was a case series. CONCLUSIONS: Diagnosis of lipoedema is mainly clinical and through exclusion of other disorders. There is no consensus on its treatment, but treatment focuses on attempting to minimise symptoms and prevent disease progression and the disability it may generate.

[Lipedema, the Unknown]. / Le lipœdème, cet inconnu.

Lipedema, the Unknown Abstract. Lipoedema patients suffer from the widespread ignorance of their pathology. Considering its chronic, progressive and invalidating character, the early diagnosis of the disease must constitute the challenge of their caregivers in order to limit medical wanderings and the occurrence of complex clinical pictures. Treatments allow the reduction of lipedema and its long-term control. Management must be individualized according to the stage of the disease. The adherence of the patient, the supervision and the support of the practitioner are essential for obtaining the best results.

[Lipedema: Which Etiological Pathways?] / Le lipœdème: quelles pistes étiologiques ?

Lipedema: Which Etiological Pathways? Abstract. The pathogenesis and epidemiology of lipedema are uncertain, and its diagnosis often delayed. Lipedema almost exclusively affects women, and a link to sex hormones is likely. The metabolic risk of this accumulation of fat in the lower limbs is not known, and weight loss has no impact on the morphology of the lower limbs. Due to the aesthetic discomfort and frequent initial misdiagnosis which results in inappropriate treatment, this condition can lead to significant psychological suffering for the patient. A better understanding of this disease is essential to the proper diagnosis and support for these patients, as well as guiding them in the effective care.

S1 guidelines: Lipedema.

The present, revised guidelines on lipedema were developed under the auspices of and funded by the German Society of Phlebology (DGP). The recommendations are based on a systematic literature search and the consensus of eight medical societies and working groups. The guidelines contain recommendations with respect to diagnosis and management of lipedema. The diagnosis is established on the basis of medical history and clinical findings. Characteristically, there is a localized, symmetrical increase in subcutaneous adipose tissue in arms and legs that is in marked disproportion to the trunk. Other findings include edema, easy bruising, and increased tenderness. Further diagnostic tests are usually reserved for special cases that require additional workup. Lipedema is a chronic, progressive disorder marked by the individual variability and unpredictability of its clinical course. Treatment consists of four therapeutic mainstays that should be combined as necessary and address current clinical symptoms: complex physical therapy (manual lymphatic drainage, compression therapy, exercise therapy, and skin care), liposuction and plastic surgery, diet, and physical activity, as well as psychotherapy if necessary. Surgical procedures are indicated if - despite thorough conservative treatment - symptoms persist, or if there is progression of clinical findings and/or symptoms. If present, morbid obesity should be therapeutically addressed prior to liposuction.

[Recognising and treating lipidema OMIM 614103]. / Le lipœdème. Le reconnaître et que faire OMIM 614103.

Lipedema is a poorly understood clinical entity that is frequently under-diagnosed and neglected or else confused with lymphoedema. However, in most cases, diagnosis is simple and does not usually necessitate laboratory examinations. There is an extremely high demand for therapy since the condition causes major morbidity and affects quality of life. The aim of treatment is to reduce patient weight; although weight loss does not affect the morphology of the lower limbs, it optimises patient mobility while reducing related complaints and improving quality of life. Conservative surgical measures, of which tumescent liposuction is the most frequent, provide improvement of certain symptoms. A better understanding of this entity will result in improved therapy.

Lower extremity lipedema, upper extremity lipodystrophy and severe calcinosis complicating juvenile dermatomyositis.

Juvenile dermatomyositis (JDM) is a rare but complex and potentially life-threatening autoimmune disease of childhood. Significant proportions of patients have residual weakness, muscle atrophy, joint contractures, and calcinosis. Recently, new clinical findings, such as lipodystrophy accompanied with increased fat deposition in certain areas, have been reported. So far, it is not known whether the redistribution of body fat may be the type of lipedema of lower extremity. We describe a 39-year-old woman who was diagnosed with JDM at the age of 7. Later she developed symmetrical lipodystrophy of upper extremities and symmetrical lipedema of lower extremities (making 2 and 58.3 % of total body fat mass, respectively), with multiple calcified nodules in the subcutaneous tissues. These nodules gradually increased in size despite therapy. Capillaroscopy findings showed scleroderma-like abnormalities. ANA and anti-U1RNP antibodies were positive. Similar cases with simultaneous occurrence of the lipedema of lower extremities, lipodystrophy of upper extremities, and severe calcinosis complicating JDM have not been published so far. We showed that the calcinosis and lipodystrophy were associated with short duration of active disease. Also, we display case that raises the question whether it is possible overlapping autoimmune diseases revealed during follow-up.