Myopathies and continuity of care for patients with neuromuscular diseases. These are the themes at the center of a conference promoted by the Nemo Clinical Center and the Provincial Health Services Agency, which was held in Trento on 7 and 8 October. Objective: to take stock of the path that the institutions are carrying out together to take charge of the neuromuscular community in Trentino and beyond. A network model – explains a note from Nemo and Apss – which involves institutions, clinicians, researchers and patients as the only effective response for these highly complex care pathologies and which in the two days of work has addressed the issue of myopathies in full, a specific group of rare and degenerative neuromuscular diseases, for the most part of genetic origin, for which to date there is still no cure and which require management paths aimed at each person’s life plan.
And it is precisely the continuity of care that was discussed during the works, open to the presence of the institutions, with the provincial councilor for health, social policies, disability and family, Stefania Segnana; the general manager of Apss, Antonio Ferro; the president of the Nemo Clinical Centers, Alberto Fontana; Bruno Giometto, delegate of the magnificent rector of the University of Trento, together with the president for the provincial council for health, Renzo Dori, and the provincial presidents of the professional orders of surgeons and dentists and nursing professions, Marco Ioppi and Daniel Pedrotti.
Continuity between diagnosis, multidisciplinarity in taking charge and assistance on the territory – is the approach described – for a set of pathologies so varied from a clinical and functional point of view and which in this last year represents 40% of all neuromuscular patients taken managed by Nemo Trento, 50% from the Trentino area and the other half from neighboring regions. “The myopathic patient is very heterogeneous and for this reason the management project must be related to the specificities of each person and at the service of the daily life of each person – says Riccardo Zuccarino, clinical director of Nemo Trento and scientific manager of the conference – Who lives a myopathy is constantly looking for a balance and our goal from the clinical point of view is precisely to help maintain this balance. This is why the rehabilitation project must necessarily start from listening to the need to give care responses that are shared and accepted “.
Among the topics addressed, the note reports, a focus on the most common myopathies: muscular dystrophies with Elena Pegoraro and Luca Bello (University of Padua); congenital myopathies with Claudio Bruno (University of Genoa); myotonias of type 1 and 2 with the analysis of Valeria Sansone (Centro Nemo Milano) and Salvatore Stano (Centro Nemo Trento); facio-scapulo-humeral muscular dystrophy of types 1 and 2 with Enrico Bugiardini (University College of London); inflammatory myopathies with Andrea Barp (Centro Nemo Trento).
Despite the variety and heterogeneity of the pathologies, for all the priorities they are the same. First of all, the need to understand the multiplicity and variability of clinical recognition signals, for an increasingly early diagnosis: in the absence of a decisive treatment, in fact, it is necessary to intervene as soon as possible with targeted treatments that maintain functional balance. And then the importance of preserving continuity between research and clinic, to build ever more accurate disease histories and give answers in the shortest possible time. Again, the priority of working on a multidisciplinary management to guarantee the quality of life that patients need today and to maintain their functionality over time, also in light of the new therapeutic perspectives being tested today with active clinical trials.
During the two days a particular study was dedicated to breathing, with the contribution of Massimo Croci (Centro Nemo Trento), to understand how to support the increase in respiratory work from the rehabilitation point of view, in the face of the weakening of the voluntary muscles. Then a focus on motor rehabilitation with Zuccarino, central to understanding how to preserve the autonomy of the person, and another on nursing care with Maria Giovanna Grisenti (Centro Nemo Trento and Apss), a fundamental link in the multidisciplinary team, in terms of observation, monitoring and recognition of what the patient experiences.
The proceedings closed, leaving the word to the patient community. Among them the delegates of the national associations of patients with neuromuscular disease: Stefano Minozzi, president of Uildm Bolzano; Davide Tamellini, president of Uildm Verona; Sonia Pruner, contact person for Aisla Trentino Alto-Adige; Simone Pastorini, national councilor of the SMA Families Association; Fernanda De Angelis, Parent project scientific office.
The conference was organized with the patronage of the Autonomous Province of Trento, the University of Trento, members of the Nemo – Uildm Centers, the Telethon Foundation, Aisla, Sma Families, the Vialli and Mauro Foundation for Research and Sport and the Slanciamoci Association – National Federation of Orders of surgeons and dentists (Fnomceo) and National Federation of Nursing Professions Orders (Fnopi).
#Rare #neuromuscular #disorders #Trento #focus #myopathies #treatments