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Lipedema is a little-known alteration or disorder in the distribution of body fat, which affects almost exclusively women and primarily involves the lower extremities.   Epidemiological data are currently scarce and not helpful to determine the exact incidence of lipedema in the general population; its etiology and physiopathology are not clear enough; its diagnosis is basically clinical, since there are no specific diagnostic tests or enough scientific evidence to support it. However, its clinical manifestations imply deterioration in patients’ quality of life due to the physical, psychological and social impact it entails.   Since about 70% of cases are associated with pain in extremities, these are usually referred to phlebology and lymphology specialists. Treatments to control the edema are not usually successful in reducing the volume of the extremities.   This is in addition to determinants of fashion from the 21st century that demand most women to have slender bodies, while the reality is that overweight and obesity are alarmingly increasing. About 80% of obese patients do not admit to have excess weight, complicating its early diagnosis and prevention of its evolution and, consequently, delaying treatment in patients with this disease.   Due to the clinical presentation and symptoms associated with lipedema, patients are often misdiagnosed with lymphedema, obesity, lipodystrophies or chronic venous insufficiency, and therefore they are not correctly and effectively treated; in the best case scenario, they are administered symptomatic treatments.   In the absence of unified criteria for lipedema, and given the national and international controversy surrounding the term, the Spanish Association of Lymphedema and Lipedema (AEL) has put together a multidisciplinary working group of health professionals from different fields involved in the diagnosis and treatment of this disorder to draft this Consensus Document.   The aim was to answer multiple questions using the documentary evidence and clinical experience available to date.   Is the currently described physiopathology enough to explain lipedema?   Is it a progressive alteration? Does it always get worse?   When you have lipedema, is the progressive increase in body fat percentage normal?   If the main symptom is not the edema: Is manual lymphatic drainage an essential tool for the treatment?   Is it correct to prescribe compression garments in all cases?   What are the most effective treatments?   This working group included the participation of: The Spanish Association of Lymphedema and Lipedema (AEL), the Spanish Chapter of Phlebology and Lymphology (CEFyL) from the Spanish Society of Angiology and Vascular Surgery (SEACV), the Spanish Society of Aesthetic Medicine (SEME), the Spanish Society of Plastic, Reconstructive and Aesthetic Surgery (SECPRE), the Spanish Society of Dietetics and Food Science (SEDCA), the Complutense University of Madrid, and doctors specialized in Physical Medicine and Rehabilitation from the Spanish Society of Rehabilitation and Physical Medicine (SERMEF).   This document includes several chapters on the definition and physiopathology of lipedema, its diagnostic methods, differential diagnosis, classification and treatment using physical, pharmacological and surgical means. It is hoped that it can help people with lipedema and health professionals caring for them.   However, there is still a lot to learn about the etiopathogenesis, diagnosis and treatment of lipedema, so research must continue and be completed with epidemiological studies of its incidence and prevalence, always using an interdisciplinary approach.

EXECUTIVE SUMMARY Lipedema is a chronic condition that occurs almost exclusively in women and manifests as symmetrical buildup of painful fat and swelling in the limbs, sparing the hands and feet. A critical issue is the poorly understood disease biology, which for diagnosed patients results in limited treatment options that, at best, ameliorate the symptoms of lipedema. Individuals who suffer from the disease are further impacted by the absence of diagnostic tools, the lack of public and medical awareness of lipedema, and the stigma associated with weight gain. As a result, the true number of women with lipedema, or its epidemiology, is unknown. Braving these challenges is an active, numerous, and engaged patient community eager to participate in lipedema research. Supported by equally devoted caregivers and researchers, the lipedema field presents an immense opportunity for scientific and medical advancements. To capitalize on this potential, the Lipedema Foundation and the Milken Institute’s Center for Strategic Philanthropy convened leading stakeholders to discuss the current state of lipedema science and identify the key philanthropic research opportunities to advance the field. Little is known about how and why lipedema develops in a patient. Although the disease is reported to occur during puberty and other periods of hormonal changes, why this happens is not understood. The painful fat and swelling in some patients can be so debilitating that their mobility is impaired; yet what drives these symptoms is unknown. Psychosocial issues are also prevalent in women with lipedema, contributing to health burden and complexity of disease management. Furthermore, many patients develop the disease alongside obesity; however, diet, exercise, and weight loss surgery have limited effect on lipedema fat. Although the lack of disease biology is staggering, philanthropic investments in research can leverage the desire of patients to participate in studies to improve their and the entire field’s understanding of lipedema. The convergence of multiple scientific topics around lipedema indicates that addressing these gaps in research will also improve the understanding of hormone, pain and edema, mental health, and metabolic biology. There are no diagnostic tools or tests for lipedema. Diagnosis of lipedema involves a clinical assessment and discussion of the individual’s medical history, a process that is difficult to scale within the current healthcare system. The absence of diagnostic tools to streamline or confirm a clinical diagnosis is a key unmet need, which if addressed by philanthropy, has the potential to dramatically change the trajectory of the disease. Investing in research efforts to advance novel imaging technologies to diagnose lipedema is a promising research avenue that would simultaneously benefit individuals who suffer from the disease and healthcare providers unfamiliar with the condition. The public and medical community are not aware of lipedema. Lipedema was initially described in 1940, yet little knowledge about the disease has permeated the general public, with a concomitant lack of mention in the educational curriculum of medical trainees. Addressing this challenge will require philanthropic efforts to define the disease from a basic, clinical, and diagnostic perspective. A key philanthropic opportunity is support for a lipedema patient registry linked to a tissue biorepository. This effort has the potential to generate and support the needed disease research, while engaging patients as partners in understanding the science of lipedema.

Lipedema is a chronic, incurable, often progressive affliction that occasionally causes significant morbidity. Initially, patients develop a disproportionate increase of body fat in the legs, buttocks and/or arms. Dieting and physical exercise have only limited effect on this disproportionate body fat distribution. The legs may be sensitive and are prone to bruising after only mild trauma. This can deteriorate into severe pain and reduced mobility, ultimately leading to a limitation of activity and social participation. As a result, lipedema patients may often be diagnosed with obesity. Dietary measures generally affect the obesity component but have little effect on the disproportionate body fat distribution. Because lipedema contributes to an increased BMI, even in non-­‐obese patients, a connection between lipedema and excessive calorie-­‐intake or obesity is often incorrectly assumed. In addition to physical problems, lipedema can also lead to psychoso-­‐ cial problems. These are often caused by the failure of consulting professionals to recognize or acknowledge the condition, or because (incorrect) recommendations for weight loss and physical exercise do not contribute to improvements in the complaints. Therefore, it is important to recognize lipedema early so that its accompanying symptoms can be acknowl-­‐ edged at an early stage and be incorporated into an integrated treatment. Little consistent information regarding the diagnosis or treatment of lipedema is found in the literature. Therefore, the goal of this directive is to attempt to establish a consensus for the diagnosis of lipedema and to discuss its symptoms and influencing factors, as well as its effects on activity and social limitations, as these negatively influence the life of the patient.

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.