What do we really know about lipedema?

Lipedema is an accumulation of subcutaneous fat, mainly in the lower body, which is resistant to weight loss and occurs almost exclusively in women. It is often painful, prone to bruising and is thought to have a genetic component, which is likely triggered by hormonal changes. Although lipoedema was recognised as a condition more than 80 years ago, our understanding of the condition and its aetiology remains incomplete. This is due in no small part to the fact that lipoedema has only recently been included in the official classification of diseases. Virtually all aspects of the condition are controversial, starting with its classification. The symptoms of lipoedema overlap with those of obesity, lipodystrophy, lymphoedema and connective tissue disorders. There are as yet no specific tests, and due to the uncertainty surrounding diagnosis, there is also considerable uncertainty regarding the prevalence of lipoedema, with estimates varying widely from 1 in 75,000 to 39 per cent of all women. Many hypotheses have been put forward regarding the cause of lipoedema, including that it is a lipid metabolism disorder, a connective tissue disorder, or an inflammatory or immune-mediated disease. A definitive cause has not yet been identified, and the search for ‘lipoedema genes’ has so far yielded no conclusive results, with the exception of individual genes that play a role in only a small proportion of all patients.

The best treatment currently available is perhaps liposuction; the effectiveness of other therapies varies, and there are reports of success with complex physical decongestive therapy and anti-inflammatory treatments. Dietary measures and physical activity are cited as potentially helpful, but the number of meaningful evidence-based studies is limited due to the small sample sizes. All the characteristics of lipoedema mentioned above suggest that – much like coronary heart disease (CHD) – it is a complex, multifactorial condition for which there is no single causative gene. There are clear parallels between the complexity of CHD and the challenges involved in understanding lipoedema. Although lipoedema is now generally recognised as a somatic condition, there remains considerable uncertainty regarding its nature. Accepting this complexity, rather than seeking simple explanations, helps to account for many of the difficulties faced in lipoedema research. In contrast to CHD, which has been the subject of extensive research funded by substantial grants for a century, lipoedema is a niche area of research with limited resources. Promising areas of research could include the identification of potential risk factors and improved diagnostic methods, and possibly even the development of a laboratory test.