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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.

Recommendations: 1.1 Evidence on the safety of liposuction for chronic lipoedema is inadequate but raises concerns of major adverse events such as fluid imbalance, fat embolism, deep vein thrombosis, and toxicity from local anaesthetic agents. Evidence on the efficacy is also inadequate, based mainly on retrospective studies with methodological limitations. Therefore, this procedure should only be used in the context of research. Find out what only in research means on the NICE interventional procedures guidance page. 1.2 Further research should report: • patient selection, including age, effects of hormonal changes (which should include effects seen during puberty and menopause) and the severity and site of disease • details of the number and duration of procedures, the liposuction technique used (including the type of anaesthesia and fluid balance during the procedure), and any procedure-related complications • long-term outcomes, including weight and body mass index changes • patient-reported outcomes, including quality of life. 1.3 Patient selection should be done by a multidisciplinary team, including clinicians with expertise in managing lipoedema. 1.4 The procedure should only be done in specialist centres by surgeons experienced in this procedure.

Introduction Lipoedema is a chronic and progressive fat distribution disorder characterised by a symmetrical disproportional increase of adipose tissue on the extremities. The disorder is most commonly associated with pain, oedemas, increased tendency of bruising, as well as sensory dysfunctions on the affected limbs, resulting in severely reduced quality of life (QoL) for exclusively female patients. According to current clinical guidelines, conservative treatment of lipoedema consists of manual lymphatic drainage, compression garments, or both combined as complex decongestive therapy (CDT). If conservative therapy does not result in sufficient improvement of symptoms, a surgical intervention, in the form of liposuction under tumescence anaesthesia, may be indicated. This systematic review aims to assess the clinical effectiveness and safety of liposuction in patients with lipoedema (stage I-III) in comparison to any conservative treatment, concerning patient-relevant outcomes, as reduction of pain, reduction in the size of extremities, improvement of QoL, and procedure-related adverse events. Methods A systematic literature search was conducted in December 2020 in five databases to answer customised research questions on clinical effectiveness and safety-related outcomes, yielding in overall 294 potentially relevant hits. One additional hit was identified by hand search. The study selection, data extraction, and assessment of the methodological quality of the studies were performed by two independent researchers. Results A total of six prospective and one retrospective single-arm before/after studies were eligible for inclusion in the current report. Overall, data on safety and clinical effectiveness were evaluated in 492 and 467 female patients of all three lipoedema stages, respectively. The post-operative follow-up ranged from six months to twelve years. Clinical effectiveness Due to the lack of controlled trials, no conclusions on the comparative clinical effectiveness of liposuction for lipoedema could be made. Therefore, data from the prospective single-arm studies comparing patient-reported complaints before and after the liposuction were analysed. All six prospective studies reported statistically significant improvements in pain outcomes pre- vs post-liposuction. These effects were reported beginning at a six-month follow-up but also up to twelve years after the intervention. Reduced sizes of patients’ extremities before-and-after liposuction were reported in three of the included studies, in terms of reduced leg volume and circumference of lower extremities. Statistically significant changes in lipoedema-related QoL outcomes were reported by four studies. Further, reduction in complaints about oedema/swelling, bruising and sensory dysfunctions were reported in some of the included studies.

The purpose is to determine whether surgical therapy of lipedema (stage I, II or III) using Liposuction the pain in the legs compared to the use of complex decongestive therapy (CDT) relevant improved.