Lipedema, a malady that is not well-understood, can detrimentally affect one’s quality of life, ability to work, and healthcare costs. It has created physical unease, psychological pain, and other health issues. Despite the far-reaching effects of Lipedema and its potentially high rate of occurrence, there is still very little information about how many populations it affects, how often it interferes with people’s lives, and the accurate price of its healthcare.
The lack of information on Lipedema is due to the lack of epidemiological studies. To understand the effects of the disease, it is necessary to obtain accurate and creative prevalence data. This would allow us to develop relevant research questions, improve diagnostics and treatments, inform patients and providers, and, most importantly, persuade funders and decision-makers to prioritize these efforts. In this writing, we assess the existing epidemiological research and emphasize how high-quality studies and novel research techniques could demonstrate the real effects of Lipedema both on individuals and healthcare systems.
Accurate prevalence figures for Lipedema are essential to best address the issue. Without precise data, efforts to combat this condition are severely hindered.
The majority of estimates highlight that Lipedema is not a rare condition. The exact Lipedema prevalence is uncertain, though a 2020 literature review suggests that 10-11% of women, or approximately 400 million people, have it . However, the studies used in this review are based mainly on European populations, which could skew the overall picture. A British dermatology department documented 67 Lipedema cases over 15 years, yielding a minimum prevalence of 0.001%. An online screening tool in Brazil showed that 12.3% of respondents met the Lipedema criteria, while a Germany screening found that 4.8-9.7% had moderate to severe Lipedema. This means Lipedema is relatively common in women.
The presence of signs and symptoms associated with Lipedema is widespread. To determine the prevalence of Lipedema, it is necessary to understand the presence of specific symptoms associated with the condition. All existing Lipedema diagnosis guidelines mention pain as a potential symptom, but recent estimates of pain and sensitivity prevalence vary between 62 and 100 percent. Those with Lipedema report a wide range of pain that can range from mild to severe and from “dull” to “throbbing” to “tearing”. Unfortunately, the intensity and quality of the pain is not always described in studies.
The effects of Lipedema extend beyond just the visible excess adiposity in limbs. Many people report fatigue, attention and working memory issues, bruising, swelling, cold skin, spider veins, enlarged fat pads around the knees, and hypermobile joints. However, due to a lack of systematic large-scale surveys, the exact prevalence of these symptoms is difficult to determine, making it hard to identify the most needed treatments.
Lipedema Prevalence Research: Why Quality Data Matters
While Lipedema occurs almost exclusively in women, Lipedema’s precise prevalence is uncertain. This knowledge gap is mainly due to inadequate studies of epidemiology. With more accurate prevalence data, we can identify important research questions, develop better diagnostics and treatments, educate patients and providers—and crucially motivate funders and policymakers to prioritize all of these efforts. Learn more about why the data matters and how we can uncover the answers here.
Recognizing the Symptoms
Lipedema is characterized by specific symptoms that differentiate it from other conditions. The most noticeable symptom is the disproportionate enlargement of the lower body, particularly the legs, hips, and buttocks. This irregular fat distribution can give the appearance of two different bodies combined, with a smaller upper body and a significantly larger lower body. The affected areas may exhibit a lumpy or nodular texture, and the skin may bruise easily. Individuals with lipedema may also experience pain, tenderness, and a heavy feeling in their legs. Other symptoms can include swelling, fatigue, and the development of spider veins or varicose veins in the legs.
It is important to note that lipedema can significantly impact an individual’s physical and emotional well-being. The appearance of the legs and the challenges in finding appropriately fitting clothes can lead to self-esteem issues, social isolation, and psychological distress. Therefore, early recognition and appropriate management of lipedema are crucial for improving the quality of life for affected individuals.
Causes and Risk Factors
The exact cause of lipedema is still unknown, but several factors may contribute to its development. Hormonal influences are believed to play a role, as lipedema often starts or worsens during hormonal changes such as puberty, pregnancy, and menopause. Hormonal contraceptives, such as birth control pills, may also contribute. Additionally, evidence suggests a genetic component to lipedema, as it tends to run in families.
While obesity itself does not cause lipedema, there is a correlation between the two conditions. It is estimated that more than 50% of individuals with lipedema have a body mass index (BMI) higher than 35. However, it is important to note that lipedema cannot be attributed solely to excess weight, as it is a distinct medical condition with unique characteristics.
Certain risk factors may increase the likelihood of developing lipedema. Being assigned female at birth, having a family history of lipedema, and having a BMI higher than 35 are factors associated with a higher risk of developing the condition.
Diagnosing lipedema can be challenging due to its resemblance to other conditions and the lack of awareness among healthcare professionals. A thorough medical history, physical examination, and evaluation of symptoms are essential for accurate diagnosis. Painful fat deposits and the presence of a significant difference in size between unaffected feet and affected legs can be indicative of lipedema.
There is no specific diagnostic test for lipedema. Still, imaging studies, such as ultrasound, DEXA scan, magnetic resonance imaging (MRI), computed tomography (CT), or nuclear medicine imaging, may be utilized to rule out other conditions or identify any associated complications. These tests can help differentiate lipedema from conditions such as lymphedema and assess the extent of fat deposition.
Non-Surgical Lipedema Treatment Options
While there is no cure for lipedema, various treatment options are available to manage the symptoms and improve the quality of life for individuals with the condition. The treatment approach may vary depending on the severity of symptoms and individual needs.
Compression therapy, involving compression garments or bandages, is commonly recommended to reduce swelling and support the affected areas. Physical and occupational therapy, including manual lymphatic drainage therapy, can help improve mobility, reduce fluid buildup, and enhance overall well-being.
Dietary changes, such as adopting an anti-inflammatory diet, may help manage symptoms and reduce the progression of lipedema. Strength and conditioning exercises, particularly low-impact activities like water exercise, can improve circulation, increase mobility, and promote overall fitness.
Counseling or therapy may be beneficial for individuals with lipedema to address the psychological impact of the condition, including depression, low self-esteem, and body image concerns. Additionally, specialized surgeons can perform liposuction in select cases to remove the diseased lipedema fat and improve mobility and quality of life.
Exploring Lipedema and Other Health Conditions
Because Lipedema is often mistaken for other health issues, people who suffer from it may also experience other conditions. One study determined that those with Lipedema are more prone to obesity, lymphedema, migraines, and hypothyroidism, yet further confirmation is necessary. Variations in prevalence for Lipedema and its associated comorbidities are broad. For instance, obesity prevalence for Lipedema patients ranges from 37.6% to 79.6%, with migraines impacting 7% to 22.6% of patients. If the overlap between Lipedema and these comorbidities could be determined, medical professionals would be able to create better care plans, and researchers could accurately measure the economic burden of the disease.
The monetary cost of healthcare is not the only cost that needs to be considered; there are hidden costs as well. Healthcare systems must evaluate the overall cost of providing services, not just the financial cost.
The economic effects of Lipedema are not well known due to a lack of prevalence data. To understand the financial burden Lipedema patients face in terms of healthcare and employment, a more precise picture of the associated costs must be established. This data can then be used to evaluate the cost-effectiveness of various treatments. Not only does Lipedema have a major impact on individuals, but the entire healthcare system is affected as well.
Gathering Data on Lipedema: Challenges and Possibilities
Obtaining accurate information on the frequency of Lipedema continues to be a difficult endeavor due to the significant financial and temporal expenditure required for conducting quality epidemiological research. Moreover, there is no standard diagnostic criteria or coding system to rely on when identifying people with the condition, making the data unverifiable. As a result, more creative strategies for prevalence studies may be necessary.
New methods of data collection may assist. Large public health databases could be a helpful resource, including the UK Biobank, the National Cohort in Germany, and the National Health and Nutrition Examination Study in the US. Additionally, collaborations with healthcare providers with more experience with Lipedema (e.g., gynecologists or bariatric surgeons) could be utilized, as well as long-term studies of other conditions (e.g., obesity) to measure the risk of Lipedema in those populations.
Results have already been seen with data mining. In 2022, an analysis of UK Biobank data to distinguish between women with and without the Lipedema phenotype revealed 18 regions in the genome that are potentially associated with the condition. This shows that, despite difficulties, novel techniques and available resources can be utilized to gain further knowledge on Lipedema’s incidence and causes.
Working Jointly to Achieve Positive Results
The difficult nature of epidemiology research notwithstanding, it may hold the key to transforming the way Lipedema is explored and treated. Through more accurate estimates of its prevalence, we can illustrate to those in charge of funding and policy-making the significance of investigations into Lipedema and increase encouragement for future studies that are creative and advanced.
Lipedema Surgical Treatment Options
Ultimately, effective treatment will require surgical intervention to alleviate the appearance and pain of symptoms. Liposuction performed on the affected limbs is generally the most effective treatment. Removing diseased fat deposits helps reduce swelling of the limbs and alleviates the pain that holds patients back from everyday activities.
This surgical treatment can provide various benefits and relieve the symptoms you are experiencing from lipedema. Dealing with lipedema can be difficult, especially if you are just now starting to take control of it.
Lipedema reduction surgery is different from cosmetic liposuction. Studies have shown that women with Lipedema have impaired lymphatic function. Lymphatic fluid promotes the growth of more fat cells, which can overwhelm the lymphatic capillaries (branch-like blood vessels). Extra care must be taken to avoid injuring the lymphatic system and worsening an already stressed system. Studies have shown that lymphatic function can improve after this type of liposuction in women with Lipedema using blunt cannulas, generous tumescent anesthesia, and special surgical techniques. Lipedema reduction surgery aims to remove the fibrous tissue and maximally reduce the lipedema tissue. It is a “debulking” surgery, not a cosmetic surgery.
Seeking Professional Help
If you suspect that you may have lipedema, it is important to consult with a healthcare professional who specializes in the condition. A vascular surgeon, plastic surgeon, or dermatologist with expertise in lipedema can provide an accurate diagnosis and recommend appropriate treatment options based on your needs. Early diagnosis and management of lipedema are crucial in preventing the condition’s progression and improving overall health outcomes. By seeking professional help, individuals with lipedema can receive the care and support they need to manage their symptoms and maintain their quality of life. Lipedema is a prevalent condition that primarily affects women, causing abnormal fat buildup in the lower body. While the exact prevalence of lipedema is still uncertain, estimates suggest that a significant portion of the female population may be affected. Recognizing the symptoms, understanding the causes and risk factors, and seeking appropriate treatment are essential for managing lipedema and improving overall well-being. By increasing awareness and understanding of the condition, we can ensure that individuals with lipedema receive the care and support they deserve.
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Kruppa et al. (2020) explored lipedema-related topics such as pathogenesis, diagnosis, and treatment options in their Deutsches Arzteblatt International article titled “Lipedema-Pathogenesis, Diagnosis, and Treatment Options” (DOI: 10.3238/arztebl.2020.0396).
Analysis of the inherited condition of Lipedema from Child, Gordon, Sharpe et al. was presented in the American Journal of Medical Genetics, Part A in 2010. The study showed that the condition is genetic in origin. DOI: 10.1002/ajmg.a.33313.
Marshall and Schwahn-Schreiber (2011) conducted a study to assess the prevalence of lipoedema among professional women in Germany. The results of this study were published in Phlebologie, issue 40(03), with a DOI of 10.1055/s-0037-1621766.