Report VIII Congresso Nazionale ITALF – II Congresso Nazionale LIO
Roma – 26-28 Settembre 2024
Pontificio Ateneo Regina Apostolorun
Ten years after the foundation of ITALF, the national congress was held in Rome at the ‘Campus Universitario’ Ateneo Pontificio Regina Apostolorum, associated with the II National LIO Congress.
In the two days preceding the Conference, two ‘open days’ were organized during which Professor Simarro and the undersigned visited some patients in front of small groups of operators who alternated over time. This unique experience allowed us to delve into all the clinical and instrumental diagnostic aspects of Lipedema, an emerging pathology that is very common in the population, especially in women.
As usual, the congress was attended by doctors from various specialties, physiotherapists, nurses, orthopedic technicians, and patients, both personally and represented by the national coordinators of several associations (Resilia, LIO, Limphido, Linfedema con Noi, ANDOS, FAVO). The morning before the congress, the proceedings began with a meeting between healthcare professionals, patients, and patient associations. During the meeting, former Minister of Health Francesco De Lorenzo (currently president and coordinator of the Federation of Voluntary Associations in Oncology and the European Cancer Patient Coalition) spoke, highlighting the steps taken together with ITALF (including the INPS Guidelines on Lymphedema) and what still needs to be done to support patients. Lawyer Santangelo then mentioned new legislative measures and regulations that better protect the health of patients with chronic diseases who require adequate and continuous care. Patient associations strongly emphasized the need for Medical-Legal Committees to be more aware of the problems of patients with Lymphedema and Lipedema, so as to “not deny”, as often happens, the rights of the patient, who, by receiving adequate treatment, would also have a lesser impact on community costs, both in terms of care and social security. At the end of the various considerations, an update was made for closer and more significant collaboration between the various parties represented for the common goal.
The Congress then began with greetings from the Rector’s Representative of the University, who wished all those present a fruitful work, followed by the Mayor of Marino, Stefano Cecchi, who emphasized how the vascular rehabilitation service established (and strongly desired at the political level) at the San Giuseppe Hospital carries out an activity that meets the needs of many patients not only locally but also from all the Castelli Romani, Rome, other provinces of Lazio, and even extra-regional users.
Next, the President of the European Cancer Patient Coalition delivered greetings and reminded us that today in Italy there are over 3.5 million cancer patients, and about one-fifth of them present vascular problems, primarily secondary lymphedema. This was followed by the turn of patient associations and representatives of the SIMFER societies (Dr. Sciuscio representing Dr. Beretta) and the European Society of Lymphology, in the person of its President, Professor Francesco Boccardo.
The first session, dedicated to basic sciences, then began. Two videos, one by Ezio Fulcheri on nerve alterations in chronic lymphedema and the other by Carlo Bellini on congenital lymphatic dysplasia, highlighted some particular problems that are rarely discussed but are nevertheless useful for understanding these diseases. Savino Sciascia then described some notes on lymphangiogenesis in the kidney that can characterize certain diseases of the organ, stimulating, in turn, further research ideas.
A presentation by the undersigned followed on the status of implementation of the guidelines on lymphedema and related pathologies (a document signed at the State-Regions Conference on September 15, 2016). Some new developments, following meetings with the technical and political side of the Ministry, are emerging; among these is the hope for an upcoming official recognition of Lipedema as a disease, the classification of lymphedema among the diseases of the cardiovascular system, protections for patients with secondary lymphedema who have lost some forms of protection for treatment when they were considered cured of cancer, and the importance of genetic testing in the study of primary lymphedema. However, precisely with a view to verifying the status of implementation of the ministerial guidelines, a verification is being studied with the various regions and autonomous provinces regarding the implementation of the document’s contents, which will have to be followed by updates linked to the new evidence that has matured since 2016.
A session dedicated to the lights and shadows of the national lymphatic care network followed, with Ricci, Piantadosi, Onorato, Sciuscio, Boccardo, Leone, Stasi, and Vaglio taking turns highlighting how homogeneous care at the national level is still far off; this situation is not dissimilar to other countries (well illustrated by Onorato) and is also determined by the growing discrepancy between available resources, which are increasingly scarce, and the requests for assistance, which are, on the contrary, continuously increasing
The first day of the Congress concluded with a presentation by the World Coordinator of the International Lymphoedema Framework, Christine Moffat, who highlighted the excellent collaboration with the Italian TEAM in a perspective of ever-growing collaboration among the various national experiences with a view to achieving common results for the benefit of patients.
The second day opened with a session dedicated to elastic garments. Domenico Corda introduced the fundamental concepts for the most appropriate prescription of garments, followed by Manuela Sciuscio who described the prescriptive modalities in light of the New Nomenclature (DPCM 2017) which will soon enter into common practice at the national level. Subsequently, three experts in elastic compression, Emiliozzi, Monni, and Benenati, described the problems that arise between patient and company, those related to measurement, and those that determine the choice between standard and custom-made. Physiotherapists Katia Boemia from Naples and Tiziana Galli from Milan (the latter national head of GIS/AIFI), along with the physician Vasilka Cincieva, responsible for the care of patients with lymphedema at Villa Regina Nursing Home in Arco di Trento, then intervened. They emphasized the importance of involving both the healthcare team and the patient in the choice of the final garment, in order to guarantee patient compliance with the therapy
Corradino Campisi then presented his lecture, highlighting how Italy, in many ways, is the cradle of modern Lymphology thanks to the great figures who have written fundamental pages of its recent history. A session on clinical and instrumental diagnostics followed, with the participation, in person or via video, of Onorato (Udine), Mander (Rome), Ventroni (Rome), Maccauro (Milan), Fontana (Asiago), Ningfei Liu (Shanghai-China), and Jean Paul Belgrado (Belgium): high-resolution ultrasound, diagnostic lymphoscintigraphy, lymphoscintigraphy as a primary prevention tool, lymphangioscopy, and lymphangio-MRI, integrated techniques, now allow us to refine diagnostic and differential diagnostic aspects for the most appropriate treatment and long-term management of the disease.
An interesting session on post-oncologic lymphedema allowed us to take stock of some aspects that surgery (but not only) must observe in the primary prevention of secondary lymphedema, in various clinical settings, as highlighted by urologist Alessio Zuccalà and senologist Marcello Santoni; the latter, recalling the enormous progress of preventive diagnostic modalities and the timeliness of the combined approach to tumor pathology (biological and immunological therapy also based on genetic, proteomic, and metabolomic information), underlined how treatment, in many tumor forms, is increasingly conservative and respectful of the integrity of the lymphatic system as a whole. Boccardo, Corrado Cesare Campisi, Guido Gabriele, and the school of the Gemelli Polyclinic subsequently presented reconstructive and reparative therapeutic protocols that recognize increasingly refined and effective techniques for improving the quality of life of post-oncological patients
The afternoon sessions then opened with a lecture by Maurizio Ricci who retraced some legislative and regulatory steps that have led to the current procedure that accompanies the certification of illness and the consequent therapeutic plan. Present in the room was the one who contributed to the realization of most of these guidelines, Dr. Domenica Taruscio, for many years head of the National Center for Rare Diseases at the Higher Institute of Health. She congratulated the speaker, author, according to her, of ‘a clear and explanatory presentation as rarely heard at a Medical Congress’.
A multi-society round table followed on the different perspectives on the management of edema in deep vein thrombosis. In addition to the undersigned, Manuela Sciuscio represented the SIMFER, Romeo Martini, President of the Italian Society of Angiology and Vascular Pathology, Raul Mattassi represented the Italian Society for the Study of Vascular Anomalies, Enrico Oliva, President of the Italian Society of Lymphatic-Phlebology Oncology, Angelo Santoliquido, President of the Italian College of Phlebology, and Salvatore Venosi, President of the Italian Society of Clinical and Experimental Phlebology. Brief, exhaustive flashes to describe the paths of diagnosis, differential diagnosis, physical, medical, and surgical therapeutic approach, and long-term monitoring of the sequelae of post-thrombotic syndrome, first and foremost edema.
The fifth session saw the alternation of Costantino Eretta (Sarzana), Mario Bellisi (Palermo), Giancarlo Rando (Alba), Giuseppe Botta (Siena), and Francesco Lione (Reggio Calabria) on the causes and clinical pictures of Phlebo-lymphedema; a more common nosological entity than it appears in clinical practice and with important implications for more effective therapeutic support.
A new round table followed on the points of view of the patient and the healthcare provider in the “care management”. Carlo D’Aurizio (Popoli), Giuseppe Morreale (Roma), Fabio Romaldini (Marino), Maria Antonietta Salmé (Pescara), lawyer Maria Teresa Santangelo (Viterbo), Manuela Sciuscio (Lecce), Elodie Stasi (Torino), and Domenica Taruscio (Roma) well represented the need to share care pathways on the one hand, and to fill the numerous “system gaps” on the other, in order to improve the overall and continuous “care management”.
The sixth session was dedicated to the management of complications and prevention. Alberto Macciò (Savona), Andrea Marini (Cagliari), Sofia Faletti (Brescia), and Angela Piantadosi (Napoli) illustrated the various groups of complications determined by primary and secondary lymphedema, with a consideration also given to the social implications that inevitably end up penalizing, in many circumstances, the most indigent patients and their families.
On Saturday, September 28th, the conference opened with a presentation by the undersigned on Lipedema, a disease recognized by the WHO only in 2022, despite being very widespread, especially in the female population, and causing varying degrees of disability. To help spread awareness of the disease and to try to interpret some of its etiopathogenic, clinical, and therapeutic aspects, a new international association, the Lipedema World Alliance, was founded in 2021. In addition to healthcare professionals from around the world, patient associations also play an important role, as long advocated by the WHO itself.
The work continued with a presentation by our US colleague, Karen Herbst, on everything we know (so far) about the disease, including genetic aspects and nutritional management.
Andrea Sbarbati (Verona) then presented stunning preparations of adipose tissue, combined with very high-resolution ultrasound studies, which lead to certain etiopathogenic and clinical considerations, including differential diagnosis. The difference, for example, between Edematous-Fibro-Sclerotic Panniculopathy (commonly known as Cellulite), which sees morphological alterations essentially of the superficial subcutaneous adipose layer, and Lipedema, which, on the other hand, affects the deeper fat, is already a decisive element for different therapeutic approaches. Mander highlighted equally decisive ultrasound images, especially with reference to the complete disruption of adipose septa in Lipedema, and Onorato emphasized how pain in Lipedema is linked to multiple determining factors, first and foremost inflammation. Already in the initial lecture of the day, the undersigned had pointed out the inverse proportionality found in many patients between the plasma concentration of Pregnenolone sulfate and the pain perceived by the patients.
Simarro then focused his keynote speech on the clinical aspects that allow for a diagnosis of Lipedema: from the evocation of pain to the examination of joint hypermobility, from a history of allergies to the association with phlebolymphatic disorders. Dr. Gaeta (Spain) then briefly illustrated a topic that was later developed in one of the 8 workshops held alongside the main congress: the neuromodulation of sleep and pain as a stabilizing element for the patient. A new round table among researchers (the undersigned with Matteo Bertelli, geneticist from Rovereto, Ciarmela Pasquapina, anatomist from Ancona, and Roberto Cannataro, biochemist and nutritionist from Cosenza) highlighted how various studies, precisely of microscopic anatomy, genetics, somatic and germline, proteomics and metabolomics, and biochemistry, intersect with each other leading to shared conclusions and useful for the understanding of some salient aspects of the disease; this is a prerequisite for the search for the most appropriate therapeutic solutions.
A session on conservative treatment of Lipedema followed, with Pfeffer (Australia), Simarro (Spain), Cannataro (Cosenza), and Fabbro (Udine) emphasizing the importance of nutritional aspects, physical activity, and lifestyle habits on the positive or negative outcomes of the disease. Alessandro Amato (Brazil), Belgrado (Belgium), Serena Michelini (Rome), Elettra Fiengo (Pomezia), and Laura Di Renzo (Rome) then described some of the conservative physical techniques that are proving to be most useful and effective in treating the disease, foremost among which are deep myofascial massage and tecar therapy, all combined with an adequate diet.
The session on Lipedema surgery then took place, with the German group of Mojtaba GHods from Potsdam, Corrado Cesare Campisi (Rapallo), Nicola Vaia (Rome), Barbara Hersant (France), and Agostino Bruno (Rome) alternating (some in person and some via video). They all emphasized that well-performed surgery to remove pathological adipose tissue can provide important long-lasting results in both resolving pain and improving personal, relational, and social performance
The Congress concluded with a final roundtable discussion among associations, during which Uniamo, in particular, reaffirmed its strong commitment to advocating for the needs of Lipedema patients in all relevant institutional settings. This was met with applause from LIO President Valeria Giordano, who, after acknowledging the association’s dedication, with everyone’s support, to the interests of Lipedema patients, highlighted the interest generated by the various presentations and, together with the undersigned, awarded the prizes for the best scientific works dedicated to Giovanna Pitotti (won by Sara Mantovani with her presentation) and Massimo Favini (won by Rinaldo Caldirola with a presentation on operator-dependent mechanical drainage techniques)
However, as mentioned, the Congress also featured numerous and interesting workshops held concurrently. The first one focused on the management of pediatric patients with lymphedema, where Elodie Stasi and Christine Moffat presented educational models useful for young patients and their caregivers in dealing with daily challenges. The second workshop explored the most suitable type of yarn to choose based on individual clinical cases. The third workshop focused on the use of deep oscillation therapy in the treatment of Lipedema and Lymphedema. The fourth workshop addressed the use of tecar therapy in the treatment of Lymphedema and Lipedema. The fifth workshop, led by the undersigned and Angelo Santoliquido, focused on the diagnostic and therapeutic approach to peripheral vascular edema, emphasizing the significant role of mesoglycan in the treatment.
The sixth workshop focused on the clinical and instrumental diagnosis of Lipedema, featuring a remote presentation by Karen Herbst from Arizona
The sixth workshop focused on the clinical and instrumental diagnosis of Lipedema, with a live demonstration by Simarro on the clinical examination of a patient with Lipedema, while also answering questions from the audience. The seventh workshop, held by NASA expert Gaeta (Spain), covered the neuromodulation of the autonomic nervous system. The eighth workshop, led by Biagio Biancardi, discussed the role of iron in chronic inflammation of lymphedema and its chelation, with the undersigned also contributing to the discussion.
All the Congress sessions and workshops were recorded and will be posted on the official websites of ITALF and LIO in the coming weeks.
We would like to thank the facility that hosted the event and the organizing secretariat GC Congressi, which has been supporting ITALF in its congresses for years.
We look forward to seeing you in Lecce for the IX ITALF National Congress, which will be organized by Manuela Sciuscio in June 2025
Sandro Michelini,
Presidente ITALF
Valeria Giordano
Presidente Lio
