In the spirit of naturalness and simplicity this year too, in collaboration with the Limpido patient association, Elodie Stasi and Professor Dario Roccatello organized the usual Campus dedicated to young patients with primary lymphedema and their families.
As recalled by the sociologist of the group, dr. Cioffi, who personally took care of some of the events that took place in the ‘three days’ together with Elodie, one of the main purposes of the initiative is precisely to ‘ease’ the psychological tension that involves the little patients and their families by putting them, quite simply, at ease in a natural and relaxing environment.
One of the funniest initiatives turned out to be the ‘Bandaged treasure hunt’, where the so-called ‘Band of bandages’, inspired by the homonymous documentation kept at the Egyptian Museum in Turin, after having bandaged individual patients in adolescence directed to an exciting treasure hunt, a source of delightful muscular exercise under bandages, with a sure therapeutic effect.
In this context, the University Master of Turin linked to primary Lymphedema was inserted in which Jean Paul Belgrade, Isabelle Queré (who also sent greetings to all present by the President of the International Lymphoedema Framework Christine Moffat) brought their experience ) and the writer who welcomed and applauded the initiative by ITALF (which also granted patronage to the initiative as a whole)
The writer presented the current ‘welfare’ condition towards patients with primary lymphedema, both nationally and internationally, underlining their ‘strengths’ and ‘weaknesses’ for which we are still striving at an institutional level to the resolution of individual problems. The overall balance is that, especially with the progress made in recent years, achieved both on a scientific and regulatory level, the Italian situation is almost ‘envied’ worldwide, despite the many aspects that need further monitoring and ‘adjustment’.
A second report concerned Lipedema and this was the circumstance for the first ‘public’ discussion concerning the discovery of a first gene responsible for ‘non-syndromic’ Lipedema published a few days ago by myself and illustrious co-authors and already the subject of consultation on the pub-med website.
Interest in this type of problem is growing and one of the main next objectives on the part of scientific associations and patients is to ensure that in the regional reference centers for these pathologies, truly trained people must be chosen as expert referents, in consideration of the multiple circumstances, verified with clinical experience, of too many diagnostic errors made even by institutionally chosen figures for the setting of diagnostic-therapeutic protocols towards these patients who, in practice, still show, in some cases, a reduced clinical competence specifies that it can lead to erroneous clinical ‘paths’ for patients, as well as incongruous ‘expenses’ on the part of individuals, families and the community.
Unconditional thanks to Elodie Stasi and Dario Roccatello for the great passion lavished in organizing these events and for the high degree of competence and professionalism, which they continue to highlight, which constitutes an element of undoubted enrichment to the initiatives themselves.
See you next year (as well as with them, we also agreed with Isabelle and Jean Paul, with the hope that the COVID19 problem will definitively move away from the panorama) to continue sharing the knowledge that always increases with the passage of time. plus our healing potential, as well as our natural passion for research. Laplace said that for each question mark that science manages to put in relation to human problems (each new discovery), at least 5 or 6 new question marks are generated that the discoveries themselves raise and restart, in a more or less frenetic way, the research itself.
Dr. Sandro Michelini
Candia canavese 5 Settembre 2020