World Lymphoedema Patient Day Report Marino 6 March 2023

 

This year ITALF, in collaboration with the Edema section of SIMFER and ASL Roma 6, organised an event to mark the 7th World Lymphoedema Patient Day.  

The meeting had been preceded by a visit, in the previous afternoon, with some of the speakers from outside the region, to the Mitreo of Marino (the best artistic work of its kind in Europe, splendidly preserved) with an interesting explanation by the Director of the Museo Civico di Marino, Archaeologist Alessandro Bedetti.

 

                                   

 

ITALF chose the territory for the event, organising it in Marino, one of the Castelli Romani, where the institutional sensitivity of Mayor Stefano Cecchi and the entire Municipal Structure embraced the idea from the very first moment, given that the topics discussed were of interest and aimed at possible solutions to many of the still unresolved care problems related to lymphatic pathologies. The choice of a ‘public’ and ‘territorial’ location (the marvellous Museo Civico di Marino) was precisely intended to testify to the need (felt even more so after the terrible experience of the ‘Pandemic’) to combine the interests of patients, health workers, and institutional authorities, all converging towards the common goal of improving the quality of life of people affected by these pathologies. The mayor, moreover, is the first person responsible for the health of his citizens, and his actions require a continuous dialogue with the public health facilities that insist on the territory of the municipality, and not only. For this reason, the choice of the institutional location and the invitation to attend by two mayors (of the Municipality of Marino and the Municipality of Ciampino, Lawyer Emanuela Colella, once united in a single Municipality) represented a further moment of aggregation between citizens and institutions.

                                          

 

However, the meeting was also attended by Dr. Cuccaro, on behalf of the Director General of Health Planning of the Ministry of Health, who followed most of the proceedings from the beginning of the event with keen interest, and brought her Director’s personal greetings as well as expressions of keen interest in proceeding with further steps in the near future, in favour of the complete inclusion of lymphatic pathologies within the Essential Levels of Care, in a homogeneous manner throughout the country. This is a moral commitment made, which will be translated in the coming weeks into specific in-depth studies on the regulatory conditions, differentiated in the individual regions, and into further discussions with the scientific societies close to these pathologies and patient associations, also present at the meeting.

 

From Resilia, represented by its President Maria Antonietta Tonci Salmé, to Limphido, represented by Dr. Zurlo, to Lipedema Italia Onlus, in the person of its President Dr. Valeria Giordano. 

 

The day was opened by the inaugural greetings of the scientific societies (Romeo Martini, President of SIAPAV; Giuseppe Genovese, Founding Member of SIF; Francesco Boccardo, President of the European Society of Lymphology; Christine Moffat, World Coordinator of ILF). Corradino and Corrado Cesare Campisi then presented the next World Congress of the International Society of Lymphology to be held in Genoa from 11 to 15 September.

 

The series of pre-arranged meetings then began. 

The first session, dedicated to lymphoedema in the age of development, saw Roccatello, head of the Piedmont regional network of rare diseases, who reported on some epidemiological data, take turns with Zolesio, who emphasised the problems of patients in adolescence, with patients and parents of young patients who brought their testimonies on the difficulties of a timely diagnostic and therapeutic assessment, assisted by physiotherapists Romaldini and Vaglio. Isabelle Queré, through a film, then highlighted the importance of involving young patients also in dedicated ‘campuses’, a concept taken up by Elodie Stasi and, in her presentation on education and training, by Marina Cestari.

 

                       

 

 

Francesco Boccardo, president of ESL, Manuela Sciuscio, national coordinator of SIMFER’s oedema section, and Tiziana Galli, national coordinator of AIFI’s lymphoedema working group, then highlighted the strengths and weaknesses of territorial networks dedicated to lymphoedema patients, pointing out how, regardless of the ‘latitude’, the ‘leopard-spot’ care deficiencies still affect citizens in many regions, and how much is still missing to make the indications of the document on the guidelines operative, in a homogeneous manner throughout the country.

 

                 

In the following session, issues related to the provision of elastic garments to patients with primary and secondary lymphoedema were discussed, in the presence of the ASL Roma6 head of prosthetics, dr. Sgarbazzini, who confirmed the willingness of his offices to meet the needs of patients with lymphoedema as much as possible (in fact, ASL Roma 6 was the first, in Lazio, to comply with the contents of the Lazio regional resolution of 2018, which committed to provide the garments with the allocation of extra-LEA funds, in compliance with the contents of Annex 5 of the DPCM 2017, which redefined the new tariff nomenclature, finally including elastic garments among the garments to be provided because they are due to patients who are entitled to them). Some patients also brought their testimonies, pointing out how, with the system of tenders for the supply of ‘made-to-measure’ elastic garments to companies, it often happens that they have to deal with technically less trained personnel or with facilities that are far away from their homes (with the consequent operational difficulties). Concepts reiterated by therapists Cocozza and Campagna (ASL Roma6) and orthopaedic technicians Benenati, Emiliozzi, Monni and Territi.

Then came the greetings of the Authorities, with the Mayor of Marino calling for ever closer operational cooperation between the health authorities and territorial politics, the Mayor of Ciampino reinforcing the concept by emphasising the importance of the work of territorial health structures for the health of citizens, and Dr Cuccaro representing the DGPS of the Ministry of Health, who followed the day’s work very closely in order to bring it back to ministerial level and work on it to further improve the contents of the State-Regions Agreement.

 

                                         

 

This was followed by the speech of the company’s Health Director, Dr. Roberto Corsi, who, highlighting the importance of the ASL service dedicated to patients with lymphoedema, confirmed the company’s interest in developing this aspect of care, which has proved to be important for the community of citizens in the area. Drs. Sandroni and Molinari, respectively in charge of the nursing and health professions at ASL Roma6, then took the floor, confirming the importance of the dedicated service, which is useful not only for residents in ASL Roma6 but also from outside the province and region. The Honourable Giulio Santarelli, president of the ‘Castri Moenium’ Rights and Health Association, then extolled the role of the hospitals of the Roman Castles, wishing for a return to their original meaning, a true garrison for the protection of citizens’ health. The Hon. De Lorenzo, president of the European Council Cancer patients, then recalled the close cooperation with ITALF, which led, among other things, to the drafting by INPS of a special document entirely dedicated to lymphoedema disability, convinced that it will have to continue and grow in the near future.

Prof. Saraceni, Professor Emeritus of Physiatrics at ‘La Sapienza’ University, then recalled how, at the urging of Dr. Michelini, when he was technical secretary to the Minister of Health, he organised a commission by decree that, with its work, led in time to the signing of the document on the guidelines on lymphoedemas and related pathologies at the State-Regions Conference in September 2016. After the speeches, already mentioned, of the patients’ associations, Professor Mario Vetrano, Director of the School of Specialisation in Physiatrics at ‘La Sapienza’ University, who announced the establishment of a forthcoming Master’s Degree Course in Lymphological Rehabilitation at the University itself, which follows a Higher Education Course in Lymphology already held in 2021, and the President of the International Society of Lymphology, Dr. Miguel Amore, from Buenos Aires, brought their greetings.

After the lunch break, we resumed with addresses of greetings from around the world. Starting with Albert Leduc, who recalled how every time he takes part in a scientific event in Italy, he always remembers that our country represents for him and for the entire scientific community the ‘cradle’, the ‘source’ of Lymphology for the illustrious national anatomists and clinicians who have, over time, paved the way for this science. This was followed by good wishes for good work (not limited to today but projected in time) from Turkey (with Pinar Borman), from Poland (with Andrej Szuba), from the Czech Republic (with Martin Wald), from Greece (with Evangelos Dimakakos) from Spain (with Isabel Forner Cordero), from Germany (with Mojtaba Ghods who also presented the forthcoming World Congress on Lipedema in Potsdam), from Colombia (with Alejandro la Torre, coordinator of the Colombian School of Lymphology), from the USA (with Emily Iker) from Russia (with Alexandra Rovnaya), Australia (with Neil Piller), Denmark (with the always very active, patient and volunteer, Pernille Hericksen), Brazil (with Mauro Andrade), China (with Ningfei Liu), Japan (with Eikiki Okada) and the United States (with Stanley Rockson, Editor of the journal Lymphology Research and Biology, one of the most accredited in the world, who emphasised how continuous research is useful for improving the quality of life of patients).

After a presentation by nutritionist Giovanna Pitotti on the dietary indications for patients with lymphoedema, who basically prefer rightly caloric intake, including short-chain fats, the session on secondary lymphoedema was followed by a presentation by Ferruccio Savegnago, who described the path of women undergoing breast surgery in the Breast Unit of Vicenza, Dr. Santoni, head of the Breast Unit of ASL Roma 6, who highlighted how the surgical approach, thanks to the synergic anti-cancer therapies now available, is less invasive and more conservative. Santoni, head of the Breast Unit of ASL Roma 6, who highlighted how the surgical approach, thanks to the synergic anti-tumour therapies now available, is increasingly less invasive and more conservative, Dr. Silvia Fontana who described the activities of the new beds dedicated to patients with lymphoedema at the public hospital of Asiago, to the writer, who emphasised that the intakes and durations of treatment must be absolutely customised according to clinical priorities and individual care commitments, also in order to better enhance the work of the rehabilitation TEAM; Maurizio Ricci then reported on the decades-long experience of his Rehabilitation Day Hospital Department at ‘Le Torrette’ Hospital in Ancona, which has dedicated and dedicates much space to patients with lymphoedema; Stefano Gentileschi (of the U. O. of Plastic Surgery at the Agostino Gemelli University Polyclinic) once again emphasised how lymphatic surgery must always be included in a discourse of synergy with other therapies, physical and medical, for the best clinical results; Alfredo Leone and Manila Lebois (from Catania, Italy) who demonstrated how ‘Campus’ experiences for adults strongly help, both physically and mentally, patients to overcome their reduced abilities, improving their quality of life; Jean Paul Belgrado then closed this session by demonstrating new compression systems (whose effectiveness is also widely demonstrated by videofluoroscopic studies) that are easily adaptable on the lower and upper limbs.

In the last session, some structures presented their work ‘in progress’ in favour of patients with primary and secondary lymphoedema: starting from Villa Regina (Arco di Trento) with its 20 beds dedicated to lymphological rehabilitation hospitalisation, where patients from all over Italy are treated intensively, and continuing with the U.O. of Vascular Surgery at the Hospital of Palermo with Mario Bellisi, who highlighted the care paths, including the new experiences on primary lymphoedema with monoclonal cells, and again with Giancarlo Rando, who showed the new organisation of the newborn ward dedicated to rehabilitation (with more lymphological niches) at the Piemonte Hospital of Verduno, to end with Francesco Lione, who, in Reggio Calabria, is agreeing on a PDTA dedicated to patients with primary and secondary lymphoedema at the hospital. And also Dr. Angela Piantadosi of Naples, head of lymphological rehabilitation at the Serapide Centres, who has done a lot of work for the PDTA of Primary Lymphoedema in the Campania region, which seems to be finally reaching its implementation phase.

                                     

 

An exciting ‘tour de force’ on an important day, in the splendid setting of the Museo Civico di Marino, where politicians, technicians, health workers, patients and patient associations took turns with the sole aim of increasing positive commitment to the lymphoedema patient. The day certainly helped to increase interest in these issues and to increase enthusiasm for care and research, already giving many inputs of realities that, over time, have arisen and are growing with this common goal throughout the country.

Thanks again to the institutional figures (first and foremost the Mayor of Marino Stefano Cecchi and the ASL Roma 6 Corporate Health Director Roberto Corsi) whose sensitivity and support made it possible to realise this event, which was certainly celebratory, but also strongly proactive. 

A final consideration, gratitude for the work done, towards the organising secretariat, GC Congressi di Roma, which, in a very tight timeframe, managed to realise all the organisational aspects necessary for the realisation of the event.