Report I Brazilian National Congress on Lipedema
Sau Paulo 2-3 December 2024
The first Brazilian National Congress on Lipedema, organised by Paula Frederici with the support of the Brazilian Patients’ Association Abrali, has just ended.
The event was attended by more than four hundred health professionals from the various regions of Brazil, with the writer, Karen Herbst, José Simarro, Kate Forster and Manuela Marquez among the foreign guests.
The afternoon before the Event was marked by our visit to the Paula Clinic where for over seven hours, with the collaboration of two patients, José Simarro presented his diagnostic protocol, which also allowed for a very interesting exchange of experiences between all those present.
The Congress began with Paula Frederici’s speech, a splendid presentation of the problem that afflicts so many patients (with a clear predominance of females over males, as we all experience) and of how the Brazilian Patients’ Association contributes to the defence of their rights, first and foremost with healthy and widespread information.
It was then the turn of the presentations by some of us foreign guests with an initial introduction on the clinic of Lipedema, made, as usual, in a masterly manner by José Simarro who, among other things, once again explained how the involvement of the ‘internal and external saphenous compartments’ underlies certain pathogenetic and clinical aspects of the disease.
This was followed by a presentation by Karen Herbst, who added other aspects related to the clinical semeiotics of the disease, but also to certain comorbidities that are frequently associated with the picture itself and condition its treatment and prognosis.
The author then took stock of current genetic, germline and somatic, metabolomic and proteomic, as well as biochemical knowledge relating to the disease, presenting the LWA Association and the forthcoming World Congress to be held in Rome on 5, 6, 7 and 8 November 2025.
It was then the turn of the psychological aspects involving the patients, which Dr Elisangela Nina skilfully described, also highlighting this aspect of the disease that too often takes a back seat, even though it also heavily influences the behaviour in the patients’ daily lives (from diet, to clothing, to relational life in general).
After lunch, Brazilian speakers such as Patriani, Wolpe, Giucide and Ditzel took turns to emphasise, respectively, the various aspects of individual nutritional approaches relating to intestinal complaints caused by diets, the ‘Low Carb’ diet, the ketogenic diet and the Mediterranean diet. Undoubtedly, an individualised and compatible diet should be reserved for each patient.
Subsequently, Nadai, Burgos de la Obra, Bertolin, Tenorio, Manfrim and Fantini respectively presented their experiences on the most advanced surgical techniques, often combined, to achieve the best clinical results and taking into account the prevention of possible complications, as well as the post-surgical ‘care’ itself.
The following session focused on the differential diagnosis between lymphoedema and lipedema (unfortunately, the error in the clinical classification of the individual case is still very frequent today). Camille Beltrame, Edson Blanco, Thais Mussi and Karen Herbst also presented some aspects of differential diagnosis with Obesity and Dercum’s diffuse and painful lipomatosis. Paula Frederici, drawing the conclusions of the first day’s proceedings, then presented the topics that would be covered on the following day and closed the session.
The following morning opened with an interesting round table discussion on the role of patient associations (representatives of Lipedema UK, And Linfa and Abrali were present) in discussions with healthcare professionals and in the drafting of diagnostic and therapeutic care pathways. The occasion was also an opportunity to present the idea of the Consensus Document that LWA is about to publish, drafted at the end of a laborious study carried out using the Delphi method in which patients themselves played a decisive role in guiding the discussion as a whole.
Paula Frederici and Luiz Paulo then presented a number of initiatives that will be developed at the national level to spread knowledge about the disease in the coming year, including a Course in which international lecturers will participate and be invited to bring their experience.
The following session, attended by the surgeons, served to present the therapeutic approach with individual clinical cases described in terms of a personalised approach based on a number of specific objective and subjective problems.
The session devoted to physical therapy featured Nadai, Matta, Pucci and Almada, who respectively addressed the topics of muscle mass care in the patient with lipedema, the effectiveness of compression therapy, manual lymph drainage, and the right physical exercise for the patient to learn and exercise.
The concluding session of the Congress was dedicated to the role of hormones in the disease: Paula Frederici, Luiz Paolo, Thales Medeiros and Elvidio dos Santos described the interactions between hormones and lipedema, including the possible therapeutic options of the most suitable contraceptives.
Two intense days that saw many of the Brazilian health workers involved on a daily basis with the patients and some of us from abroad take turns, with the aim of exchanging individual experiences on the basis of the still unsatisfactory knowledge that the international scientific community has on many aspects of the disease, which still need to be deepened and better understood in order to improve the quality of life of the many patients who suffer from it.
Sandro Michelini
President of Lipedema World Alliance
