Lipedema: diets, treatments and psychology to combat the condition confused with obesity

It is often confused with obesity, but this disease that afflicts millions of people, especially women, has other origins and other remedies. It is called lipedema and until 8 November 800 experts from all countries are meeting in Rome to discuss it at a world congress.

Lipedema is a chronic and progressive disorder of the subcutaneous adipose tissue that causes abnormal accumulations of fat, mainly on the hips, thighs, legs and sometimes arms. It affects about 10% of the world's female population (less than 1% of men), yet remains largely undiagnosed. Unlike overweight or cellulite accumulation, it has distinctive features such as pain on palpation, a feeling of heaviness in the limbs and ease of bruising. First described in 1940, it was officially recognised by the World Health Organisation in 2018, receiving its own code in ICD-11, the International Classification of Diseases system. "Lipedema is a disease in its own right, it has nothing to do with obesity and is very often mistaken for lymphoedema," explains Sandro Michelini, president of the Lipedema World Congress, medical director of the San Giovanni Battista Hospital in Rome and one of the authors of the discovery of AKR1C1 as the first mutated gene associated with lipedema. 'Diagnostic confusion can have serious consequences,' Michelini warns. 'Even today there are people who operate and do lymphatic-venous anastomoses in the hope that the lipedema will get better. Instead, it often only does damage'. There is another delicate aspect that the association LIO - Lipedema Italia Onlus is dedicated to, the psychological support: 'Many patients live years of frustration and discouragement, failing to achieve results despite restrictive diets and intense training, often without even being taken seriously by health professionals'.

The disease typically manifests itself during hormonal changes: puberty, pregnancy or menopause. The most important diagnostic sign is the so-called 'cuff sign': the accumulation of fat that starts above the ankle or wrist, like a sort of step, while the feet and hands remain deflated. "The foot and hand are always spared. This is the hallmark that distinguishes lipedema from other disorders,' he points out. An important breakthrough comes from genetic research. "We have discovered that it is a hereditary disease in which humans also transmit but do not become ill. So, when you go to interview the patient, you have to ask whether such pictures were already present in the female figures in both the paternal and maternal families. And the next new thing we are working on is the identification of microRNAs in diseased tissue for even more precise diagnoses'.

Apart from the particularity of the pathology, on the nutritional front, 'the ketogenic diet responds well in these masses, although it cannot be done for long periods. It should be done for a few months under medical supervision, then switch to low-carb and anti-inflammatory diets,' Michelini explains. Among the foods to avoid: 'bouillon cubes, soya and many packaged foods that contain glutamate'. Useful instead 'in anticipation of meals rich in starches, taking a teaspoon of apple cider vinegar, because it counteracts the absorption of carbohydrates'. Physical activity must be calibrated: 'It must be done with medium-low intensity because otherwise there is a risk of painful swelling of the lower limbs,' warns the expert. Elastic compression through lymphological bandages or graduated stockings is also essential.

On the pharmacological front, GLP-1 agonists, the drugs that are revolutionising the fight against obesity, are being studied. 'They certainly have some efficacy, but some side effects have been reported. It's an interesting avenue but still to be explored as far as the treatment of lipedema is concerned'. For more severe cases, 'lipedema surgery is, at the moment, the only solution, especially when there is pain. And it is also indicated in young people. There are many techniques, two work best: PAL and WAL, Power Assisted Liposuction and Water Assisted Liposuction,' the congress chairman explains. However, the warning is clear: "These operations must be performed by those who know the disease and in dedicated facilities, because you risk partial and ineffective solutions and after six months the patient is back to square one...".