Lipedema Education

What is Lipedema?

Lipedema has been described as a painful, symmetrical, fat distribution disease of the extremities with a pronounced disproportion to the trunk. Hands and feet are typically spared, resulting in the development of the “cuff phenomenon”. The disease “lipedema”, known since 1940, when it was first described by Allen and Hines, is increasingly better understood. In particular, edema is not a significant feature in this fat distribution disorder of women’s arms and legs.

Lipedema is characterized by a progressive expansion of fat mass, resulting in an alteration of body shape and silhouette due to hyperplasia of adipocytes and hypertrophy of subcutaneous adipose tissue in the extremities. Further characteristic leading symptoms include paraesthesia or numbness, sometimes presenting as pain even on discrete stimulation, and sometimes an increased tendency to haematoma in the affected areas. Lipedema affects almost exclusively women, with an estimated prevalence of up to 10%. The initial manifestation of this chronic, potentially progressive, disease often seems to be triggered during periods of hormonal changes such as puberty, after pregnancy or menopause, but hormonal contraceptives are not a recognised trigger.

The pathogenesis of lipedema has not yet been adequately clarified. At present, there are no imaging, serological or genetic tests, and no clinical measurement instruments for reliable diagnosis. Lipedema is therefore identified by clinical examination and medical history and remains as a diagnosis of exclusion.

There are conservative lifelong therapies and surgical treatments that lead to lasting improvement of the condition as with multi-stage surgical therapy (lymphatic vessel sparing liposuction). Complex physical decongestive therapy (CDT), although not always necessary with all its elements, can be an important and effective treatment. All therapeutic interventions aim at alleviating the symptoms and preventing or delaying progression. The progression of the disease, as far as limb volume increase is concerned, has been associated with weight gain, so a stable weight should be one of the goals of managing lipedema.